tag:blogger.com,1999:blog-37539227954855520542024-03-27T16:53:19.364-07:00Not so bright & ShinySarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.comBlogger201125tag:blogger.com,1999:blog-3753922795485552054.post-76871137632764854042017-06-25T23:40:00.000-07:002017-06-25T23:40:37.714-07:00Free...<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_elLtwuxifT9PO6ku1LcjEiYxynnO9wzHz5HdItLBSxAYH7ukD80zny3kWHzVjzoOQgX8VMeseav0qKYZFtoqfd7xvRRCygoDnKQ3dks6tNvw_p71YoS6lHkIRR0wFidlenPg7BOzqxEm/s1600/IMG_5549.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_elLtwuxifT9PO6ku1LcjEiYxynnO9wzHz5HdItLBSxAYH7ukD80zny3kWHzVjzoOQgX8VMeseav0qKYZFtoqfd7xvRRCygoDnKQ3dks6tNvw_p71YoS6lHkIRR0wFidlenPg7BOzqxEm/s400/IMG_5549.JPG" width="400" /></a></div>
<br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">7 years ago I said goodbye. I told you that it would be ok...that I would be ok. 7 years ago I thought I knew what I was in for...that I had it all sorted out and that I could control it all. 7 years ago I thought I was strong enough, that I would have peace in what we endured together from the moment I found out I was carrying you. As crazy as it sounds, I honestly thought I would be ok....that life would be ok. That I could shove feelings aside and get life taken care of and that there wouldn't be a scar...it's so absurd to me...to look back and feel like I knew what was about to happen.</span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I was so wrong.</span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">Honey...I thought that if I shoved my emotions aside...put on my brave mommy face that I could endure it all with ease...matter of factly. After years of holding your hand thru your pain and rushing you to the hospital more times than I can count, after watching you endure such invasive tests, procedure and surgeries...after managing to put on my brave mommy face for you every time your cough changed to "that one" and I knew it meant it was time to go...after days filled with such fear of losing you and pain from signing forms labeled DNR in bright red...after so many long nights in the hospital crying in my bed long after you fell asleep at night...i thought i could come away unscathed. I thought I could keep that phony facade up .... that charade of lies... and I thought if i could make it past a few years that I'd find a way to not hurt...I'd find a new ok....</span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">sweet Connerman...I couldn't have been more wrong.</span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I lived my life in the fight...I learned quickly how to build up high walls to protect my shattered heart...I learned to keep silent about my pain...to be so busy taking care of you and finding ways to make your day brighter...that I naively thought that was how it was going to be. </span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I'm sorry. I was wrong.</span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I kept myself so busy the week leading up to the day you went to heaven...and set up so many intentional distractions on the day and the day following, cus I thought being busy would force the time past and it wouldn't bother me. Again...I was wrong. You're always on my mind and I miss you every single day. Your name is mentioned daily in our home and you're prayed for every night as I tuck your brothers and sister into bed. Your pictures are in every room and the stories flow from my heart to anyone who will listen as often as I can... you're so much alive .... yet you're so so gone.</span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I sit on my bed in silence and tears are stinging my eyes as I finally digest the reality that you're gone. You should be here. I shouldn't be seeing your face on a piece of granite at a cemetery. Your best buddy Hunter shouldn't wake up screaming for you in the middle of the night...Bradyn should have had the opportunity to get to know you...he was only 2...and hell, your sister should've met you. It warms my heart how she says she has three big brothers and the biggest ones in heaven...and how she smiles when we talk about you...perhaps she has met you...</span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">What I've slowly realized is a mom will never be the same again without her child. Before I had you I was a very different person...and being so young and being thrown into a very serious medical life at 22 changed my life forever. When you were finally born in that surgical room surrounded by more people and machines then I could count...and your precious tiny hand held mine...I had you.Every second of everyday of your 7 years I had you....and the fight you endured was never yours alone. And when you grew tired...when it was more of a struggle to take in a breath then it was to be free...I told you to go...and after one last fight to stay...and I got to snuggle close to you and hold you in my arms and kiss your cheek and tell you it was ok...I knew my life was about to change dramatically. i got to hear your very first breath and your last....and that last breath you took...stole a giant piece of me with it...part of me left when you did. i didn't just change...part of me died. </span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I remember watching Rick Little cover your body and carry you out of my house. It suddenly became real. Id never again see you in on the couch, or in your bed...or playing in the backyard...or anywhere this side of heaven. And part of me died in that moment.</span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I think I'm learning to let go of ridiculous self expectations. I'm learning to grieve however and whenever I need to. Because watching my son be buried was torture...everything we'd said and done...the treatments and prayers...none of it was enough...and i had to face that. i had to watch it like it was rubbed in my face...the inadequacy. and it was permanent. I felt like people kept trying to get me to eat or give me something to drink or have me sit down...anything to keep me from falling apart...when all I felt inside was that I too had died and they'd forgotten to bury my heart. </span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I'm realizing again...that grief evolves over time but is permanent. It's been 7 years now and while most days I am cheerful and speak joy over having the privilege to be your mom, I embrace the many days when I'm the same giant wreck I was the day i saw you leave. From now on you have and will be gone longer than you were here...and that breaks my heart all over again. The worst part is that I wonder how you'd be now...14 years old...what would you look like, would you be into sports...or maybe sing...what would your passions be...and who would you choose to be your girlfriend....its a loss of a lifetime. So much left unsaid and so many things left undone. so many years and adventures without you. It's another shift in grief and another milestone met...and now I fully know you're gone. I have you so close to me each day and we share a special bond that Im so blessed and thankful for...but i want you. I wanna hug you and hold your hand and kiss your sweet face and take care of you. I wanna smell you and hear your voice and I want to make memories and take new pictures with you. you should be here. and at that realization, I die a little more everytime. </span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">So instead of apologizing anymore sweet boy how about a promise....</span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">Now that we're again evolving ... I am going to be more authentic in my journey. </span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I'm dropping the facade and canning that stupid charade. </span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">I'm allowing myself freedom to be authentic and real. not just some of the time. but all of the time. It's scary to allow myself to feel when it's really painful and ugly ... but I need to. theres so much good and theres also so much pain. I can't expect that part of my heart that died when you left to regenerate. it never will. But I can nurture every part of me that remains. embrace the love, the tears, the joy, the absolute torture, all the side effects of losing a great love. My strength will come by feeling...all of it. </span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;">So tonight as I sit in the silence, no longer surrounded by distractions and noise...with new perspective in mind, i simply ponder the fact that you've been gone longer then you were here....i let the pain sink in to the depths they need to...and I finally will lay my head back onto my pillow and cry...and know that even in the pain there is deep love...and we'll wake up tomorrow and face another day...free. </span><br />
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;"><br /></span>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK_bZLAB3b8OdhmoicNcT5g9HYZpTwOEKonOIdZ0f0IW40jskyAZsx5QBy8ima2oV9RxrwH1NHjvFw8pbbn59nTrq1c_FGaCCFqBUEykbxWEewFmwkHdle67rxkuULod1HYHjE1CzT9d1s/s1600/IMG_5548.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1280" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiK_bZLAB3b8OdhmoicNcT5g9HYZpTwOEKonOIdZ0f0IW40jskyAZsx5QBy8ima2oV9RxrwH1NHjvFw8pbbn59nTrq1c_FGaCCFqBUEykbxWEewFmwkHdle67rxkuULod1HYHjE1CzT9d1s/s400/IMG_5548.JPG" width="320" /></a></div>
<span style="color: #e06666; font-family: Georgia, Times New Roman, serif;"><br /></span>Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com38tag:blogger.com,1999:blog-3753922795485552054.post-34274729985488677902016-06-23T09:48:00.000-07:002016-06-23T09:48:05.396-07:00This moment...<span style="background-color: white; color: #76a5af; font-family: "georgia" , "times new roman" , serif;">Well...I can't say that I'm surprised. It's been so long. I felt a tug to write. A need to gather my thoughts in one place and free them from spinning in my head. maybe a moment of peace. Two days until THE day and it's been so long. I feel very old, worn, beaten down, weak, tired, weary...I feel a little raw. I don't really know the words or even the point of writing but as Friday draws near I keep thinking about this blog. it was my safe place. I could pour out my heart and scream for freedom from worry and it was healing and therapeutic. so much has changed and I carry the heavy weight of burdens I need to release and maybe that's why i'm here. My heart is very afraid to let anyone in. it's been trampled on. there's no one to blame but myself. I am in charge of my own life...my choices, my reactions, my thoughts, my worries...and i'm slowly learning to release control of things that really I have no control over anyway. I never really did.</span><br />
<span style="color: #76a5af; font-family: "georgia";">i'm not perfect. but no one is. </span><br />
<span style="color: #76a5af; font-family: "georgia";">I've made mistakes. but we all have.</span><br />
<span style="color: #76a5af; font-family: "georgia";"> I've lived behind masks and built walls so high they could be seen from space, and where did it get me? </span><br />
<span style="color: #76a5af; font-family: "georgia";">Here. </span><br />
<span style="color: #76a5af; font-family: "georgia";">right here.</span><br />
<span style="color: #76a5af; font-family: "georgia";">in this exact place in this exact moment.</span><br />
<span style="color: #76a5af; font-family: "georgia";">and in this moment, i'm not perfect...but i'm ok. </span><br />
<span style="color: #76a5af; font-family: "georgia";">i'm unsure where to begin and where i'm headed. but I've learned its ok. it's not about knowing...it's about learning on the journey. being open to the process. </span><br />
<span style="color: #76a5af; font-family: "georgia";">grief is hard work. it's long term. I am convinced it is never ending...we simply have to accept the ups and downs. some days are good and some days rock me to the core. but hiding behind a smile doesn't make me strong...facing the emotion and allowing myself permission to feel...that is strength. it is genuine. a fake smile is temporary. and it doesn't cover the deep pain in my heart. </span><br />
<span style="color: #76a5af; font-family: "georgia";">I love to talk about him...but I can see the pain it causes the other person. It's a delicate balance. He's real and is very loved and important to me...and I love to share that. I do infact have four kids...just one beat me to the finish line. he's still there though...waiting for us all to catch up. that reality is hard for others to hear though, and it's normal. It would hurt my heart to hear matter-of-factly that a child has died. please understand just because the words now come from my lips without tears...don't mistake that for being ok. i'm far from ok. I've accepted it. I deal with it. I don't wear the grief on my face all the time as I did for so long. and I don't share it with everyone. I protect him. me. how can I possibly put that pain into words that anyone can understand? as time passes we forget more and more of the little moments...and we remember and easily recall very pronounced moments. I can't recall all the little joys of the days we spent together...we were together every day. for seven years. I remember select moments. and those ones tear me up. his last day is engrained in my memory. there are other significant memories as well...but this time of year...my mind goes to that day. and it hurts like hell. but it's ok. it needs to. pain means it was real. and it was. he was. he is. we are.</span><br />
<span style="color: #76a5af; font-family: "georgia";">I've allowed the words of others to add to the pain of the process. life has become unsteady the last few years and everything I knew to be is no longer. I've been pushed to find my own strength. take personal responsibility for my life and for believing the lies or pushing them aside and finding my worth in Christ. it's a daily battle. just like grief...it is long term. with the unsteadiness I've been in it's made me question so much. I've been stripped down to absolutely nothing. which is ok. i'm not yet that radiant butterfly...hell i'm not even that slimy caterpillar. I've finally allowed god to push me into the cocoon and I can't escape it until I learn who I am. whose I am. my purpose. my value. I've stopped fighting the process. I don't always believe it's for my good and many days I am just breathing and hanging on. but...I know I will make it. I don't see the light at the end of the tunnel...it's been the worlds longest dark tunnel. but gods giving me little skylights on the way. little moments of love and joy and light. and that is enough.</span><br />
<span style="color: #76a5af; font-family: "georgia";">i'm very intentional with my life. who I talk to...who I no longer. who I listen to...who I no longer believe. while my entire life is evolving and has been so drastic...one constant has been god. even when I didn't reach out to him...he provided the right people at the right time for the right moment in my journey to help me thru. I don't have the answers and I don't clearly know how this all will end...or my exact path. but I know that I will be ok. </span><br />
<span style="color: #76a5af; font-family: "georgia";"></span><br />
<span style="color: #76a5af; font-family: "georgia";">but....</span><br />
<span style="color: #76a5af; font-family: "georgia";"></span><br />
<span style="color: #76a5af; font-family: "georgia";">right now...</span><br />
<span style="color: #76a5af; font-family: "georgia";">i'm not ok. </span><br />
<span style="color: #76a5af; font-family: "georgia";"></span><br />
<span style="color: #76a5af; font-family: "georgia";">everyday is a battle. a new challenge. a new opportunity to continue to believe the lies or rest in the truth. I have made choices that resulted in consequences that thrust me into a life very unfamiliar...but I am redeemed. Words of others have crushed my spirit and made me doubt who I am...but I am worth more than gold. I get angry at times that I can't hold him in my arms and I see him in my dreams often and I yearn for more...but I haven't really lost him. I've simply lost perspective...and i'm getting that back in line...slowly...but I will. </span><br />
<span style="color: #76a5af; font-family: Georgia;"></span><br />
<span style="color: #76a5af; font-family: Georgia;">It's the morning of the day that precedes "the" day and I am just unsure how I feel. Kind of hollow. Kind of alright. I'm joyful for the love that is still very real and breathing, though he is not. I smile when I think back to moments we shared along the way...he taught me how to be a mom. He would pick me flowers, help me clean, sing songs to God, line up his cars in a very particular order not to be disrupted...he always kissed me, always held my hand, always told me he loved me, always trusted me to care for him, always showed me grace when I would let my impatience get the better of me, he would lay with me on the couch and stretch his arm back and play with my hair...it was all very different. He took good care of me.</span><br />
<span style="color: #76a5af; font-family: Georgia;"></span><br />
<span style="color: #76a5af; font-family: Georgia;">where do you go when you don't know whats genuine any longer? I've been struggling greatly with a very gripping battle with anxiety and panic. it's rooted in control and a need to cling onto predictability and protect myself from hurting any longer. for the first time I feel very vulnerable and very weak. but in my new awareness of the situation in me I feel a small sense of strength as well. I know i'm not ok...but i'm aware. I believe we can't change what we don't truly acknowledge...and hell...i'm aware I need to let go. I used to build walls around myself to protect from pain...when C died I worked for years to break them all down. I was tired of not feeling. and now...I can't build walls up any longer...I won't allow it. so instead, I try to control situations like i'm a puppeteer and everything's attached to my strings. and it's not realistic. so instead of giant walls, I find myself in episodes of anxiety and panic. i'm far from healed. but I feel now my battle is learning to fully let go. there's no way to get around pain and there's no way to control anyone or anything but myself. and I need to let go. no walls. no panic. no anxiety. I've cried more in the last two years than probably ever before in my life because I've been learning a whole new way of living. </span><br />
<span style="color: #76a5af; font-family: Georgia;">who I am.</span><br />
<span style="color: #76a5af; font-family: Georgia;">who I am not.</span><br />
<span style="color: #76a5af; font-family: Georgia;">what I stand for.</span><br />
<span style="color: #76a5af; font-family: Georgia;">what I will not stand for.</span><br />
<span style="color: #76a5af; font-family: Georgia;">and I have to learn that it's ok. I don't have to settle for anything. I have a choice in every situation. how I will feel...how I will react...what I will allow...who I listen to...what words I let penetrate my heart...which words I will ignore...</span><br />
<span style="color: #76a5af; font-family: Georgia;">I had no idea 6 years ago after he was taken from my shaking arms that night I would be thrown on a journey as heart wrenching and difficult as this. that the walls would fall down and the steady ground beneath me would turn to shifting sand...but it has. and I owe it to Conner to keep myself on this journey...to honor who I am supposed to be...go where i'm supposed to go...love the way i'm designed to love...to be the very best I can be...for whomever i'm supposed to be with...and honor the boy who changed it all </span><br />
<span style="color: #76a5af; font-family: Georgia;">i'll never be the same.</span><br />
<span style="color: #76a5af; font-family: Georgia;">but I know i'll be ok. </span><br />
<span style="color: #76a5af; font-family: "georgia";"></span><br />Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com37tag:blogger.com,1999:blog-3753922795485552054.post-74465195129570662402013-11-14T11:14:00.001-08:002013-11-14T11:14:28.648-08:00JOY. filled. HOPE<p><font color="#72ced6" size="4" face="Bradley Hand ITC"><strong>Crying.</strong></font></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">Elated.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">Satisfied.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">Thrilled.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">Emotional.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">Empowered.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">Vulnerable..but now…</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">Successful…</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC"></font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">April came and after 9 months of fighting for her every ounce of weight gain we hit a wall. There was no more going around it. I wasn’t enough. her body needed more. I hated that struggle. the scale would literally raise my heart rate, cause me intense anxiety and I would panic. and I was placing her on one almost weekly in front of the watchful eyes of the doctors. I would see the scale go up and down, the numbers trying to calibrate accurately with a flailing baby on it…always moving. I would see a high number I’d pray for it to remain…then it would drop just as swiftly. I can close my eyes right now and see those red numbers move…and my heart still races. knowing what I know from the years of experience I have with this disease those numbers mean more than did she gain weight or not…those numbers directly correlate to long-term lung health and development of large, strong lungs…ones necessary to fight the beast. in April I raised the white flag. enough was enough. stepping in was no longer a thought. it was reality.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">she was admitted into the hospital I spent so many years of my life in with him…fighting. </font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">it was intensely difficult. </font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">Getting the NG tube in was uneventful and I did it myself…surprised by how even so many years later how I never forgot how to. she needed it. I’m glad we made that decision. that was April 11th…my birthday.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">the constant weight check appointments continued and each time my body would go into overdrive, my thoughts would race and I would internally panic until the truth of the number was revealed. had I done enough…the answer was almost always no. </font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">hi calorie formulas, mixing at higher rates then we had to do for Conner…struggling to find a safe formula that didn’t cause her body to break out in rashes. trying 4 different infant formulas mixing at different ratio’s, timing digestive enzymes meticulously, watching every bottle go down, thankful for each one she would take because it meant less she needed by her NG at night.  The dietician always suggesting this would be a long term issue since she started out with such severe GI issues that required surgery at 5 days old. I tucked it away in my heart. I would ask for a new formula, a new higher calorie mixing rate, I wasn’t willing to settle. As Brynlee got to 1 and became more active it became increasingly difficult to get a busy, excited toddler to stop to eat, we did the best we could, we changed her to pediasure, then to pediasure peptide so her body could absorb it since it was broken down for her. she drank it, her weight improved, but the sheer volume she needed in a day was impossible. 40 ounces a day of it infact…5 cans. So each night our nightlight was the screen on her kangaroo pump that pumped that formula into her body as she laid comfortably in dreamland. she didn’t know any different. she’s been a warrior suited for battle since hour one of her life. the sounds the feeding pump make constantly bringing me back to Conner…and his battle. and how it wasn’t enough…but always pushing that aside. always focusing on Brynlee…telling myself her story is different…unique. </font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">I’d take her to CF clinic every other week and each trip the scale was my enemy and the team had intense talks of a G-tube so her face could be free from the tube taped on it. I just didn’t want it, I’m not against G-tubes, they are so helpful for so many reasons…I just feel after my fight with Conner my biggest regret looking back was not trying more options. Just going with the flow of statistics and numbers. <font color="#ff0000"><u>Not leading with my heart</u></font>. Letting my mind stop long enough to listen to what my HEART was screaming. </font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">My heart said NO. my heart said FIGHT. my heart said DON’T QUIT. My heart screamed ENDURANCE. My heart reminded me the race in the battle against cf is NOT a sprint based upon numbers…it’s a MARATHON of decisions based upon individual knowledge, circumstances and needs. My heart screamed to be PATIENT…</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">G tube talks remain a constant focus at clinic. Her BMI’s not increasing like they should be…”Sarah you know the importance of nutrition in the outcome….” there voices trailing off realizing where all of our minds are going…there it was. BAM! a ton of bricks thrown into my fragile heart. My mind said “Sarah do the g-tube or your daughter will not live longer than Conner…” let me clarify it’s not that I truly believed that…but the enemy has a plan to KILL STEAL & DESTROY…so his lies are smart, deceptive, and deceptively packaged discreetly in a message that bears general truths. As a mom whose walked the walk down the aisle in a church behind 6 men carrying my son’s 7 year old body in a hand painted casket I can tell you from my heart…in my mind these weren’t small decisions. I did not and do not take any decision lightly. They’re all life or death. My mind says 2+2=4 and there are no other answers. But my heart says NO…I can’t describe the pain better than one of the visits in the last few months I called the social worker in with us and kicked everyone else out. she looked at me and simply said…”sarah…let it out” and I just sobbed. uncontrollably. I felt so conflicted. damned if I do, damned if I don’t. was I being unreasonable…would I be able to live with myself if I was the one to take the firm stand of trying more options before just going with the crowd…would that be the exact decision I would later regret….am I causing her body to decline…I felt more torn, more vulnerable, more scared then I had in a very long time. She was able to calm me and ask me very legitimate, necessary, difficult questions. ones that HAD to be asked. and I had to get real and I ultimately decided that I needed to let my heart win this one. regardless of the outcome. I never did with Conner, I didn’t know better. I trusted the dr’s for 100% of their expertise. After all, they have the degrees, training and knowledge…but I’ve since learned that a doctor isn’t God…I mean obviously I KNOW that’s not true. But I had to shut my brain off and let my heart remind me that a doctor PRACTICES medicine, he doesn’t have the ABSOLUTE determinations. Only god does. (please know my heart to know I absolutely value and respect our dr’s, I’m not speaking down on ANY dr here, speaking from the freedom I found in my own journey) so I had the dietician come back in the room and the social worker mediated our conversation. I must also say our CF team is amazing and no one would ever purposely try to cause pain…I just did a poor job sharing with them how much my heart was involved…which involves emotions…I held it in. I told the dietician she needed to find a new formula. One broken down like the one she was on, but one where it was higher calorie so Brynlee could drink the volume she needed to all during the day because I wanted that tube out. she thought for a moment…and then I said “is there a pediasure peptide 1.5?” and her face lit up…”YES!” We switched her immediately. Because each can was 1.5 times the calories of the other formula she only needed to drink 24 ounces, or 3 bottles a day. Last month on the new formula her weight was catching back up, so I defined our new goal was to get her to take all of her liquid medications by mouth then I would pull the tube out as long as she continued to gain.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">She had clinic yesterday.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">I’m crying I’m so excited to share…not only is she taking all of her medications like a CHAMPION…but she’s drinking goal EVERYDAY and her BMI is over the 50th percentile!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! The NG tube is PULLED!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Her lungs are doing amazing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! and she doesn’t have to go back for TWO MONTHS!!! She is such a champion. and I’m soooo beyond THRILLED for her! but in my excitement it occurred to me…god gave me this message…this experience…for you. </font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">where are YOU feeling discouraged, pressured, so close to giving up…hopeless? despairing? What is it in your life that your going thru the motions with…leading with your MIND and refusing to listen to your HEART…? is it a job? a friendship? a disease? a marriage? My heart feels compelled to urge you to SHUT OFF YOUR BRAIN…break the lies your mind tells you…lies of the enemy that cause pain, confusion, anxiety and worry…and open up and spend some time listening and FOLLOWING your heart. Gods plans are to prosper you and not to harm you…to give you a FUTURE and HOPE! Listen to your heart…and weigh in the counsel of a third party to get the tough questions asked…and you will find your answer. then act on it.</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">this is a small victory for us. and I know that it will more than likely come up again…because I’m very educated in CF and I know it’s unpredictable, just like so many things in all of our lives. but what I KNOW FOR SURE is that when you follow your heart and it’s in alignment with Gods promises, you will see victory…in whatever capacity you need. </font></strong></p> <p> </p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">So don’t give up. Never settle. Don’t quit. </font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">It’s gonna be worth it…if even for only a moment…the victory I promise you is sweeter than you can imagine and it’s worth it all!</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">I also decided it was time to not be so un-bright and un-shiny and my heart told me our journey isn’t about that anymore. So I changed the blog from <a href="http://www.notsobrightandshiny">notsobrightandshiny</a> to joyfilledhope.com</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC"></font></strong></p> <p><strong><font color="#ff0000" size="4" face="Bradley Hand ITC">LOVE LOVE LOVE</font></strong></p> <p><strong><font color="#72ced6" size="4" face="Bradley Hand ITC">always always always</font></strong></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com14tag:blogger.com,1999:blog-3753922795485552054.post-88182105504260063052013-07-10T23:03:00.001-07:002013-07-10T23:03:23.282-07:00Happy 1st Birthday sweet Brynlee HOPE<p><font color="#fb68c8" size="4" face="CoolDots">Sweet baby girl…one short year ago you arrived into our family and changed our world forever.</font></p> <p><font color="#fb68c8" size="4" face="CoolDots">Your sweet smile, </font></p> <p><font color="#fb68c8" size="4" face="CoolDots">Your always happy personality.</font></p> <p><font color="#fb68c8" size="4" face="CoolDots">Your deep love for your brothers.</font></p> <p><font color="#fb68c8" size="4" face="CoolDots">You’re the greatest addition and have made our hearts grow larger!</font></p> <p><font color="#fb68c8" size="4" face="CoolDots">A look back at how you’ve grown this first year…</font></p> <p><font color="#fb68c8" size="4" face="CoolDots">It all began July 11 2012…</font></p> <p><a href="http://lh4.ggpht.com/-x6aGEACBXmE/Ud5KMWE0QKI/AAAAAAAABYk/ph_pQGabSWw/s1600-h/012%25255B4%25255D.jpg"><img title="012" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="012" src="http://lh5.ggpht.com/-Sp3HN5svNj4/Ud5KMz5jHwI/AAAAAAAABYs/3isBZ1Bm-nQ/012_thumb%25255B1%25255D.jpg?imgmax=800" width="358" height="240" /></a></p> <p><a href="http://lh3.ggpht.com/-6tns-y9yb34/Ud5KNYG3EaI/AAAAAAAABY0/rEANk3ALMyY/s1600-h/042%25255B4%25255D.jpg"><img title="042" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="042" src="http://lh4.ggpht.com/-eGgrtjYZXnE/Ud5KN5VGffI/AAAAAAAABY8/9umJ4sR-kV0/042_thumb%25255B1%25255D.jpg?imgmax=800" width="356" height="239" /></a></p> <p><a href="http://lh3.ggpht.com/-cumeSSIWQGM/Ud5KOc8j_NI/AAAAAAAABZE/j2hCQRHwINE/s1600-h/043%25255B4%25255D.jpg"><img title="043" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="043" src="http://lh3.ggpht.com/-Xqrvz7Cm7tg/Ud5KO_idYUI/AAAAAAAABZI/0WQ8bw41Q3o/043_thumb%25255B1%25255D.jpg?imgmax=800" width="356" height="239" /></a></p> <p><a href="http://lh6.ggpht.com/-rIlBXs0g9os/Ud5KPOBL3wI/AAAAAAAABZU/iItIlcf0UTA/s1600-h/062%25255B4%25255D.jpg"><img title="062" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="062" src="http://lh3.ggpht.com/-27fwW4FTlyo/Ud5KPv6iH5I/AAAAAAAABZc/tmmzFGlFxvo/062_thumb%25255B1%25255D.jpg?imgmax=800" width="205" height="306" /></a></p> <p><a href="http://lh3.ggpht.com/-QrDdxp19SDk/Ud5KQH847iI/AAAAAAAABZk/TksQhYe2bZ0/s1600-h/074%25255B4%25255D.jpg"><img title="074" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="074" src="http://lh5.ggpht.com/-AyGcGKRqGVo/Ud5KQqlYCWI/AAAAAAAABZs/g8-wk70hueo/074_thumb%25255B1%25255D.jpg?imgmax=800" width="357" height="239" /></a></p> <p><a href="http://lh5.ggpht.com/-3I0R8tqxycw/Ud5KQ-5Dh5I/AAAAAAAABZ0/utysafT-o-Y/s1600-h/141%25255B4%25255D.jpg"><img title="141" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="141" src="http://lh4.ggpht.com/-tucRVdRkRJg/Ud5KRWRkQWI/AAAAAAAABZ8/x0o8eHi3a-0/141_thumb%25255B1%25255D.jpg?imgmax=800" width="215" height="321" /></a></p> <p><a href="http://lh6.ggpht.com/-Opee7rfKgIY/Ud5KR920DJI/AAAAAAAABaE/NWIQXFXIDEc/s1600-h/191%25255B4%25255D.jpg"><img title="191" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="191" src="http://lh5.ggpht.com/-pLr5Ddh38dU/Ud5KSFlqKkI/AAAAAAAABaM/cnpSQvLAgtY/191_thumb%25255B1%25255D.jpg?imgmax=800" width="357" height="239" /></a></p> <p><a href="http://lh3.ggpht.com/-6uUynk6LopA/Ud5KStj-MOI/AAAAAAAABaU/I14j8oWaLbA/s1600-h/018%25255B4%25255D.jpg"><img title="018" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="018" src="http://lh6.ggpht.com/-rOJNrY_wGro/Ud5KTDJP1CI/AAAAAAAABac/bo2SYfC9v64/018_thumb%25255B1%25255D.jpg?imgmax=800" width="215" height="321" /></a></p> <p><a href="http://lh3.ggpht.com/-kFy36TbQQuc/Ud5KTjF-FAI/AAAAAAAABak/bmugig0rUXc/s1600-h/003%25255B5%25255D.jpg"><img title="003" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="003" src="http://lh3.ggpht.com/-eEbn8E1zCUQ/Ud5KUcyj5ZI/AAAAAAAABas/v2VyWdKXei0/003_thumb%25255B2%25255D.jpg?imgmax=800" width="383" height="257" /></a></p> <p><a href="http://lh3.ggpht.com/-kyo1PWGvOMo/Ud5KUm-aa-I/AAAAAAAABaw/aZSTSUF47J0/s1600-h/016%25255B4%25255D.jpg"><img title="016" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="016" src="http://lh4.ggpht.com/-UVdr0Pr6ii0/Ud5KVKjtbfI/AAAAAAAABa4/MLQYM7kuOLw/016_thumb%25255B1%25255D.jpg?imgmax=800" width="212" height="316" /></a></p> <p><a href="http://lh5.ggpht.com/-GabRLizEPts/Ud5KVgHUxFI/AAAAAAAABbA/ldtKKCAarf0/s1600-h/005%25255B4%25255D.jpg"><img title="005" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="005" src="http://lh4.ggpht.com/-Dw_eFafSAEU/Ud5KV_-qQuI/AAAAAAAABbM/Im7f_Lz_Epg/005_thumb%25255B1%25255D.jpg?imgmax=800" width="213" height="317" /></a></p> <p><a href="http://lh6.ggpht.com/-FQOtRro1xNw/Ud5KWa5uDrI/AAAAAAAABbU/A1F6DxjPIxI/s1600-h/067%25255B4%25255D.jpg"><img title="067" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="067" src="http://lh6.ggpht.com/-RScJNphcRus/Ud5KW1kEUMI/AAAAAAAABbc/vrESOJ6GpEo/067_thumb%25255B1%25255D.jpg?imgmax=800" width="215" height="320" /></a></p> <p><a href="http://lh6.ggpht.com/-thY4eUbMYWE/Ud5KXeTu-yI/AAAAAAAABbk/MWJoAaYwhoc/s1600-h/097%25255B4%25255D.jpg"><img title="097" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="097" src="http://lh6.ggpht.com/-uhUkhvAhZe0/Ud5KXhQhQvI/AAAAAAAABbs/47mV-KktQkw/097_thumb%25255B1%25255D.jpg?imgmax=800" width="354" height="237" /></a></p> <p><a href="http://lh6.ggpht.com/-zmkyNB-k-oQ/Ud5KYKD3TSI/AAAAAAAABb0/eap6VZhqerc/s1600-h/007%25255B4%25255D.jpg"><img title="007" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="007" src="http://lh6.ggpht.com/-0z1tBBTMvQ4/Ud5KYsbZ1MI/AAAAAAAABb8/usPA7xfdnMc/007_thumb%25255B1%25255D.jpg?imgmax=800" width="351" height="235" /></a></p> <p><a href="http://lh4.ggpht.com/-O49FHorGofU/Ud5KYwWKHOI/AAAAAAAABcE/fHRwJ7M4Edc/s1600-h/024%25255B4%25255D.jpg"><img title="024" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="024" src="http://lh4.ggpht.com/-g7-Gsttep44/Ud5KZXKsIZI/AAAAAAAABcM/wynx7KjoshE/024_thumb%25255B1%25255D.jpg?imgmax=800" width="356" height="239" /></a></p> <p><a href="http://lh5.ggpht.com/-v9cJfvR2F8g/Ud5KZ-MLBfI/AAAAAAAABcU/8mLMUk-HHeA/s1600-h/054%25255B4%25255D.jpg"><img title="054" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="054" src="http://lh5.ggpht.com/-MaGztNKPJno/Ud5Kae-FGLI/AAAAAAAABcc/7UTFFxrXPck/054_thumb%25255B1%25255D.jpg?imgmax=800" width="211" height="314" /></a></p> <p><a href="http://lh3.ggpht.com/-BWDxIwcUXuI/Ud5Kau7WM-I/AAAAAAAABck/Aei6V15KB48/s1600-h/075%25255B4%25255D.jpg"><img title="075" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="075" src="http://lh3.ggpht.com/-sof8svqdPr8/Ud5KbO20H0I/AAAAAAAABcs/8QCpec7skto/075_thumb%25255B1%25255D.jpg?imgmax=800" width="210" height="313" /></a></p> <p><a href="http://lh3.ggpht.com/-QZ7HAk9L2gg/Ud5Kbmb6SrI/AAAAAAAABc0/aUQA_ljsnLo/s1600-h/089%25255B4%25255D.jpg"><img title="089" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="089" src="http://lh6.ggpht.com/-fag85Ea4n1U/Ud5KcDsjcvI/AAAAAAAABc8/Doti4TpM7y8/089_thumb%25255B1%25255D.jpg?imgmax=800" width="359" height="241" /></a></p> <p><a href="http://lh6.ggpht.com/-ukT9zLahQiE/Ud5KcXoyXtI/AAAAAAAABdE/BsUi7TMuIVs/s1600-h/013%25255B4%25255D.jpg"><img title="013" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="013" src="http://lh4.ggpht.com/-Q_n7rYxCyOw/Ud5Kc5ASMWI/AAAAAAAABdM/s6vW5kN-sZs/013_thumb%25255B1%25255D.jpg?imgmax=800" width="356" height="239" /></a></p> <p><a href="http://lh3.ggpht.com/-PMqZ5g69HcE/Ud5KdbLrpAI/AAAAAAAABdU/P06CoDHIeZw/s1600-h/037%25255B4%25255D.jpg"><img title="037" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="037" src="http://lh4.ggpht.com/-1J6XJvd6VLw/Ud5KeE_FvdI/AAAAAAAABdc/ZW9zfitClvI/037_thumb%25255B1%25255D.jpg?imgmax=800" width="326" height="219" /></a></p> <p><a href="http://lh3.ggpht.com/-CtZsHbQYoXg/Ud5KedbL7dI/AAAAAAAABdk/KfzVib-afsQ/s1600-h/055%25255B4%25255D.jpg"><img title="055" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="055" src="http://lh4.ggpht.com/-MUnzBUcW140/Ud5KfDOFDuI/AAAAAAAABds/hTs6vnP29MQ/055_thumb%25255B1%25255D.jpg?imgmax=800" width="209" height="311" /></a></p> <p><a href="http://lh4.ggpht.com/-AVIqkJNQHn4/Ud5KfRMAjAI/AAAAAAAABd0/F0U7Az3OyvE/s1600-h/051%25255B4%25255D.jpg"><img title="051" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="051" src="http://lh6.ggpht.com/-JVMzKM_Dk1A/Ud5Kfz4cyEI/AAAAAAAABd8/I9pPCYmKYVo/051_thumb%25255B1%25255D.jpg?imgmax=800" width="213" height="318" /></a></p> <p><a href="http://lh6.ggpht.com/-5hab4sGqG5c/Ud5KgcGKlyI/AAAAAAAABeE/c0s9p3btLik/s1600-h/066%25255B4%25255D.jpg"><img title="066" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="066" src="http://lh3.ggpht.com/-KDaTaZVQld0/Ud5KgpFidiI/AAAAAAAABeM/gbOpckIdSQ8/066_thumb%25255B1%25255D.jpg?imgmax=800" width="210" height="313" /></a></p> <p><a href="http://lh4.ggpht.com/-ZSo0yG-NeDM/Ud5KhCcBE9I/AAAAAAAABeU/Qzx-cwSn2qk/s1600-h/017%25255B4%25255D.jpg"><img title="017" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="017" src="http://lh3.ggpht.com/-Th5lCkEfHLc/Ud5Khd3_MYI/AAAAAAAABec/TNwdD-AsYBo/017_thumb%25255B1%25255D.jpg?imgmax=800" width="187" height="279" /></a></p> <p><a href="http://lh5.ggpht.com/-Qk0UmvzYfTk/Ud5KhyybitI/AAAAAAAABek/oG4R5o7ZDOc/s1600-h/050%25255B4%25255D.jpg"><img title="050" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="050" src="http://lh5.ggpht.com/-YsA_3IDZzkU/Ud5Kia7xcbI/AAAAAAAABes/88ux6uFghJA/050_thumb%25255B1%25255D.jpg?imgmax=800" width="213" height="318" /></a></p> <p><a href="http://lh6.ggpht.com/-cjLOwr_JxA4/Ud5Kih0df4I/AAAAAAAABe0/SymTYwiI51A/s1600-h/134%25255B4%25255D.jpg"><img title="134" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="134" src="http://lh4.ggpht.com/-piHTLfJndNc/Ud5KjA6xnuI/AAAAAAAABe8/rLLQnBUDosg/134_thumb%25255B1%25255D.jpg?imgmax=800" width="215" height="321" /></a></p> <p><a href="http://lh5.ggpht.com/-IIs0b3frWos/Ud5KjgncBdI/AAAAAAAABfE/yew3hLs7_S8/s1600-h/231%25255B4%25255D.jpg"><img title="231" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="231" src="http://lh3.ggpht.com/-zlp-K1OyOrY/Ud5Kj4b9CCI/AAAAAAAABfM/raDwcirQPvM/231_thumb%25255B1%25255D.jpg?imgmax=800" width="215" height="320" /></a></p> <p><a href="http://lh4.ggpht.com/-nwTmy6Khzh0/Ud5KkW0EjhI/AAAAAAAABfU/Wk7r90r3e8o/s1600-h/283%25255B4%25255D.jpg"><img title="283" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="283" src="http://lh5.ggpht.com/-UzXSDKYXBaw/Ud5KkjA8_8I/AAAAAAAABfc/Ur5gt5oSIrk/283_thumb%25255B1%25255D.jpg?imgmax=800" width="214" height="319" /></a></p> <p><a href="http://lh4.ggpht.com/-8oDfeylhyjo/Ud5KlKbdtdI/AAAAAAAABfk/CpGz8VanoLY/s1600-h/299%25255B4%25255D.jpg"><img title="299" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="299" src="http://lh5.ggpht.com/-siyHJQGMX-o/Ud5Klhm01MI/AAAAAAAABfs/eFcpCHmBfUI/299_thumb%25255B1%25255D.jpg?imgmax=800" width="214" height="319" /></a></p> <p><a href="http://lh6.ggpht.com/-21T6dbh2dC4/Ud5Kl9_cfyI/AAAAAAAABf0/fZrCDcexbaU/s1600-h/450%25255B4%25255D.jpg"><img title="450" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="450" src="http://lh3.ggpht.com/-NSr4flYd0io/Ud5KmR4n1OI/AAAAAAAABf8/UkqRyYg9oTY/450_thumb%25255B1%25255D.jpg?imgmax=800" width="359" height="241" /></a></p> <p><a href="http://lh3.ggpht.com/-wx95-UUwULw/Ud5Kmwz5OZI/AAAAAAAABgA/0feL_YIM0m4/s1600-h/518%25255B4%25255D.jpg"><img title="518" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="518" src="http://lh5.ggpht.com/--KRmfE82voI/Ud5KnFp-bXI/AAAAAAAABgI/BeWksLMYwi0/518_thumb%25255B1%25255D.jpg?imgmax=800" width="179" height="266" /></a><a href="http://lh4.ggpht.com/-A425eKkXt-4/Ud5KnnA37qI/AAAAAAAABgQ/ZsW3oMwJyzo/s1600-h/522%25255B6%25255D.jpg"><img title="522" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="522" src="http://lh3.ggpht.com/-CKLlIu8NcFg/Ud5Kn5LxlWI/AAAAAAAABgY/Mv15OPASsA4/522_thumb%25255B3%25255D.jpg?imgmax=800" width="178" height="264" /></a></p> <p><a href="http://lh6.ggpht.com/-pKFMNuWm6LU/Ud5KoaA-OTI/AAAAAAAABgk/ih-oBgxeqv8/s1600-h/031%25255B4%25255D.jpg"><img title="031" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="031" src="http://lh6.ggpht.com/-JxChkv_V57k/Ud5Ko0YoPnI/AAAAAAAABgs/ZZ65_f3q758/031_thumb%25255B1%25255D.jpg?imgmax=800" width="178" height="265" /></a><a href="http://lh6.ggpht.com/-moHA0fgNJ3U/Ud5KpAZLB5I/AAAAAAAABg0/0X22TcSojRU/s1600-h/032%25255B4%25255D.jpg"><img title="032" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="032" src="http://lh4.ggpht.com/-A7IXOkQpT2U/Ud5Kpos3hLI/AAAAAAAABg8/IJntih8BzN4/032_thumb%25255B1%25255D.jpg?imgmax=800" width="178" height="265" /></a></p> <p><a href="http://lh4.ggpht.com/-J-OqepbALAA/Ud5KqCqRvKI/AAAAAAAABhE/gvULAIBXOUs/s1600-h/014%25255B4%25255D.jpg"><img title="014" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="014" src="http://lh6.ggpht.com/-FwDLGsLWm8A/Ud5KqVP-huI/AAAAAAAABhM/5ZXe87hNjug/014_thumb%25255B1%25255D.jpg?imgmax=800" width="215" height="321" /></a></p> <p> </p> <p><font color="#62d1e6" size="5" face="CoolDots">Happy First Birthday sweetness! And MANY, MANY MORE to come!!!</font></p> <p><font color="#ff0000" size="5" face="CoolDots">Love Love Love</font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com29tag:blogger.com,1999:blog-3753922795485552054.post-83441325466593760012013-06-20T12:06:00.001-07:002013-06-20T12:06:32.509-07:00Fast forward 3 years…<p><font color="#cd8dcc" size="4" face="Lucida Handwriting">Monday marks three long years. How did that happen so quickly…yet how did it drag on SO LONG? I’ve been reflecting this last week on just how far I’ve come and in what areas I still haven’t progressed. I’ve never felt closer to God in my life, and yet there are days where He still seems so distant. I’ve forgotten completely how Conner felt all snuggled up to me in my arms, or even the warmth of his beautiful skin that last day we spent together, holding on and loving each other until he knew it was time to go and that we would be ok. I’ve forgotten his smell entirely. Yet, there are some things a mother will never forget. I can blink my eyes and remember his beautiful smile. I can hear his laugh. I can feel his joy. I remember how he trusted in me to protect him fiercely. I will never forget the way he loved his brothers, and even how his hand was in naming his sister 8 years before her birth. I can recall his protectiveness towards all that he loved, and I will forever be in awe of his real, intimate, relationship with Jesus, something I strive to become more like everyday. A child at 7, knew where he was going, wasn’t afraid and shared it with the world. what a legacy. I’ve gained new perspective in so many ways. he’s caused me to grow in my walk with God, to be intentional about it with a sense of urgency like never before, in turn helping me grow into a person that I never thought I could become. a person who doesn’t even remember what I used to be. the mistakes I’ve made, the fights I endured, the brokenness, the depression, the loneliness, and the angry person who just didn’t understand how all of this was for our good. how all of this pain was ultimately for His glory. I don’t feel sorry for myself any longer. I don’t feel I lost Conner, I think heaven GAINED him. I feel privileged in having the tiniest speck of a part in his story. </font></p> <p><font color="#cd8dcc" size="4" face="Lucida Handwriting">please don’t say your “sorry for my loss” because I’m not the one who lost anything. in fact, I’m better because of it all. the greatest privilege of my lifetime is being chosen to nurture that beautiful soul while it was his time here with us. it was never gods intention for Conner to live a long life, rather, to live, truly…<font color="#ff0000">really LIVE</font> a full life in a short amount of time. he breathed every breath as a gift because for his broken body, it was a gift. he saw an eternity without end while we only saw the decline of his health, he smiled without a reason in the world to. his body failed him, but His god did not. his god, my god, rescued him. my god freed him for a job well done. Conner lived to bring people to life and souls to god. what a tremendous calling on such a young child.</font></p> <p><font color="#cd8dcc" size="4" face="Lucida Handwriting">So, no, I’m not sorry for our loss. I miss him terribly…but not because of sadness, but because I got to be his mom. he got to be my son. I was witness to gods goodness, mercy and miracles everyday with Conner. A lesser person would’ve played victim in his ailing body…a lesser person would’ve complained of the 15 daily medications just to help him breathe, a lesser person would’ve complained for all the oxygen he had to lug around, the bipap machine he had to wear to help his lungs breathe at night, a lesser person would’ve been upset having spent more than 2 years of his life in a hospital bed, 30 admits, countless iv’s, tests, picc lines, two ports, a g tube for nutrition, and people always telling him there was nothing more they could do. a lesser person would’ve blamed God that he couldn’t run like the other kids, that he couldn't attend school because he couldn’t keep up and his body tired out too quickly. a lesser person would play victim to the mountain he was up against. </font></p> <p><font color="#ff0000" size="4" face="Lucida Handwriting">But Conner never did.</font></p> <p><font color="#cd8dcc" size="4" face="Lucida Handwriting">Because Conner knew what few will ever realize. He knew his time was limited. He knew what Gods unique purpose was for his short life and he LIVED and breathed it. He never blamed God. He found a way to be a blessing to all those who met him, cared for him and loved him. he did it all for Gods glory.</font></p> <p><font color="#cd8dcc" size="4" face="Lucida Handwriting">what a life.</font></p> <p><font color="#ff0000" size="4" face="Lucida Handwriting">what a tremendous blessing.</font></p> <p><font color="#cd8dcc" size="4" face="Lucida Handwriting">So rather than say your sorry for our loss…take a moment and reflect what Conner’s story has done to impact your life, however large or small…in some way I know it added value to each and every life reading this blog. and that is not a coincidence. never be sorry for that blessing…because I’m not.</font></p> <p><font color="#cd8dcc" size="4" face="Lucida Handwriting">I’m a better person having known and loved him, and view his passing as nothing short of a great healing miracle for Conner. A perfect reward for a life well lived despite the odds he faced. and while my body misses his presence here terribly, it doesn’t bring me sadness…it brings me the greatest joy I’ve ever known.</font></p> <p><font color="#cd8dcc" size="4" face="Lucida Handwriting">thank you Conner.</font></p> <p><font color="#cd8dcc" size="4" face="Lucida Handwriting">thank you god.</font></p> <p><font color="#cd8dcc" size="4" face="Lucida Handwriting">If you celebrate your “move up to heaven day” up there babe…may it be the best celebration ever.</font></p> <p><font color="#ff0000" size="4" face="Lucida Handwriting">I love you forever…always always always.</font></p> <p><a href="http://lh4.ggpht.com/-i2v3MF9TBqA/UcNStlKu4bI/AAAAAAAABYI/0yn5MRGvw6E/s1600-h/027%25255B6%25255D.jpg"><img title="027" style="border-top: 0px; border-right: 0px; background-image: none; border-bottom: 0px; padding-top: 0px; padding-left: 0px; border-left: 0px; display: inline; padding-right: 0px" border="0" alt="027" src="http://lh6.ggpht.com/-2FAY2Z609Pg/UcNSt_M3VXI/AAAAAAAABYQ/IclRrmsXfVs/027_thumb%25255B3%25255D.jpg?imgmax=800" width="549" height="413" /></a></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com4tag:blogger.com,1999:blog-3753922795485552054.post-62833880346500476142012-12-07T13:25:00.001-08:002012-12-07T13:25:11.319-08:00It’s been awhile…<p><font color="#62acb9" size="4" face="Bradley Hand ITC">Life has been busy. Brads schedule keeps fluctuating, two kiddos in school on different schedules and a baby with many appointments all over the area make for many busy weeks. </font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">Brynlee is a sweet pea, such a happy, easy going baby girl. such a blessing in that. she adores her brothers and they goo-goo over her every chance they can get (you know when they’re not busy doing other big boy things!) <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-smile" alt="Smile" src="http://lh4.ggpht.com/-8U8DLoSA1x8/UMJesRgMa1I/AAAAAAAABXQ/P250TsfGwu0/wlEmoticon-smile%25255B2%25255D.png?imgmax=800" /> Right now her only issue is weight. We’re working hard to find a good supplemental formula (I think we may have found it, knock on wood…) to give her to swallow her enzymes and a bottle or two a day to supplement as well. I’m mixing it at 27 calories instead of the regular 20, and after 6 different formula’s the Nutramigen so far is doing ok for her. we also believe she has a milk/soy protein allergy… so she’s fluctuating between not being on the growth chart at all, to the highest of the 3rd percentile. we’ve been taking her to clinic every other week…and now we’re kind of down to crunch time. in her first year of life as babies grow, so in turn do their lungs, so since she’s not growing well, neither are her lungs….not good. and we know that overall cf lung health is directly correlated with good nutrition, we can’t continue to let her weight remain an issue. I take her back to clinic this Wednesday, and if her weight isn’t improved after this week of added feeds, higher calories and the new formula, then she will be admitted for an NG tube. her body perhaps just needs a very elemental, predigested, broken down formula to absorb and grow as she should be. my heart is torn in two directions with this, because naturally its bringing Conner’s situation all back to me which is difficult, but also in my heart I want her to be fat and healthy. so naturally we’re going to do what's best for her, whatever Wednesday brings, and deal with the emotion that comes along with it as well. I can’t be wonder woman and pretend it’s not hard, but I also refuse to let myself feel guilt over something that’s out of my hands.</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">so for now that’s all there is to update on. lifes a bit rocky but we’re getting by, and we truly feel the love and the tremendous support we’re receiving from most everyone we speak with. it means so much to our family to know we’re not alone, and that we’re still very much loved and prayed for. It makes it all a bit easier! we have the best friends (real and virtual) in the world and we love and appreciate you all very much!</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">Blessings…</font></p> <p><a href="http://lh3.ggpht.com/-tKd3RXg25dk/UMJetIW4ArI/AAAAAAAABXY/EL-poVboR7U/s1600-h/097%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="097" border="0" alt="097" src="http://lh3.ggpht.com/-VAlS-Ke9ABY/UMJetQ0b1ZI/AAAAAAAABXg/e2TEv2A7pj4/097_thumb%25255B2%25255D.jpg?imgmax=800" width="465" height="312" /></a></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com10tag:blogger.com,1999:blog-3753922795485552054.post-79536072770308076602012-10-23T16:34:00.001-07:002012-10-23T16:34:26.770-07:00she is love…<p><a href="http://lh4.ggpht.com/-SRe_pNuDwPg/UIcpewtpniI/AAAAAAAABWc/XKBpSzc7Nos/s1600-h/005%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="005" border="0" alt="005" src="http://lh6.ggpht.com/-LXN4XmwhbRg/UIcpfbaFfBI/AAAAAAAABWg/X7vZP_xgUvs/005_thumb%25255B2%25255D.jpg?imgmax=800" width="270" height="403" /></a></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">Try as you may, some of you, your daily decisions, your life and death decisions, even your “what should we have for dinner” is never our own decision. it’s already been decided. Maybe you’ve never thought of it that way. But have you ever noticed how sometimes you run to the store for something quick you need to make your dinner, and you run into someone you know and have a conversation. meaningful at the time or not, it all plays a part in the story. His story. We may think that when we make a decision it is ours fully. surely God gave us free will…but each decision leads to an action, the action leads to a story, and the story was never written by us. Long before our existence it was written, every hair on our head counted and there for a purpose. every decision to glorify Him in someway, somehow, somewhere for someone, maybe not us, and most we will never know what for or who for…til the veil has been torn. and we see the truth.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">His truth.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">She is beautiful. She is love. She is joy. She was a decision. A decision that Brad and I discussed at long end. She wasn’t an easy decision, she was an important one. She came with risks, she came with rewards, with what-if’s and how-comes…she is love. never ours to make. She is here. she has a purpose to be here. her story was written long before we were ever dreamed up. she was meant to be here. she is life. she is love. She is Gods choice. She is His creation. She is a gift, a result of a decision that wasn’t ours, even though we had to decide. She is a blessing. She is a miracle. She is love.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">She is not a statistic. She is not a disease. She is not a mistake or a person to feel sorry for. Having life is nothing to ever be sorry for. She is not hurt or pain. She is not the same. She is different. Her situation as unique as the color of her eyes or the prints on the tips of her beautiful long fingers. she is a blessing. she is hope.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">She is not hurt. She is not to feel sorry for. She is nothing short of HOPE.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">and to anyone who can’t understand that, I pray you don’t miss the point of it all.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">it’s not our decision. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">it’s our choice to go with the dream God placed upon your heart…His plan, his desires, his creation…or to decide to ignore it.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">She is not a decision.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">She is love.</font></p> <p><a href="http://lh5.ggpht.com/-PkzWxt8ZwG8/UIcpf17KxKI/AAAAAAAABWs/uI0D1aNJ3sU/s1600-h/067%25255B6%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="067" border="0" alt="067" src="http://lh4.ggpht.com/-1t0jU7j_IV8/UIcpgXUT4dI/AAAAAAAABWw/bIv8NvS6aYY/067_thumb%25255B3%25255D.jpg?imgmax=800" width="293" height="437" /></a></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com7tag:blogger.com,1999:blog-3753922795485552054.post-49447478634345990612012-09-16T14:54:00.001-07:002012-09-16T14:54:08.234-07:00Holding on to HOPE…<p><font color="#62acb9" size="4" face="Bradley Hand ITC">So now Brynlee’s journey is out in the open…and I’m glad that it is. I’m very glad we took the time as a family to spend together, in privacy, adjusting to all that has happened these past two months. but now it’s time for some clarification.</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">we do not and never have for a MOMENT regretted having another child. We will never regret that decision. Brynlee is an absolute joy, and although she had a rough beginning, that in no way determines her future health and outcome. Those in the CF community know very well that CF is a spectrum disease. It effects each individual uniquely and differently, and so although Conner's health was poor from the start, there is no indication or expectation that Brynlee’s health will be the same. It simply doesn’t work that way. It’s also important to remember, Conner had another disease on top of the CF that made his ability to move and clear his CF mucus impossible (which is what devastated his lungs)…but beyond that in my opinion, it was never his purpose in life to live beyond when he did. I wished that it was…lord knows we miss him every second of every day…but his purpose in this life doesn’t ever have to make sense to us…only to God. I have full belief that we will be with Conner again in the blink of an eye…and all the pains of his passing will become a distant memory to never be remembered again. hallelujah for that!</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">having her diagnosed with CF was very difficult…but we know this disease inside and out, far more than perhaps others even with the disease…we’ve lived thru the worst of it, and we’re still standing. we have watched the therapies improve and new therapies being discovered these past two years and we know that CF soon will be a disease of the past. and I will never regret adding sweet brynlee to our family…I’d rather LIVE…really LIVE life and give our daughter life…than live in fear of a disease, letting it continue to direct our families path…<font color="#ff0000">CF doesn’t have that power over our family any longer</font>. <font color="#ff0000">we’ve already beat the disease, because we took away it’s ability to change who we are as people, and as a family. it used the most devastating attack on our family…but we fought harder and won</font>. One day very soon when CF is cured…I will look at my daughter with great pride and great joy knowing that we didn’t let CF scare us from completing our family…and never having the ability to meet sweet Brynlee. I know that day is coming.</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">having said that…</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">emotions are ever changing for us. we put doernbecher children's hospital in our past. we closed those doors, and I never wanted to be there again. so watching her being put in that incubator, being transported by a respiratory therapist we know very well from our days at DCH (doernbecher children's hospital), being admitted to the same NICU Conner was in at birth, having many of the same nurses we had with Conner, and ultimately transferring her care to the CF center that was his as well, was and still is very difficult. it brings back our fight with him. it makes us remember with each smell of that sterile hospital the battle we never were meant to win. I remember it all. so much of cf I had forgotten, or blocked out, because I remember Conner with love and joy, he was so much more than CF. </font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">in those first weeks with her in the hospital I would cry many times a day…I just didn’t see any of it coming. when we got to bring her home four weeks later, it took until recently to get into a routine and finally feel like we can do this…to get our heads back above water…and once again kick cf out the door of our home. it is simply a small part of who brynlee is…but it has <font color="#ff0000">nothing to do with what she will become</font>. from birth she’s been more alert and wide eyed to this world…many commented on that continuously and she’s been smiling since two weeks old…big entire face smiles…and I know why. Conner’s very near to her. they are knit together and he is her protector. like Conner, I see a baby who looks to have an older spirit. a wiser than her age, soul just as Conner did, and just as I see with so many children battling various diseases. they seem to know more than we do, and as they grow, they appreciate life and breath more than us “healthy” adults do. there is something beautiful and unique in children with special needs and conditions requiring much care. and those who are lucky enough to be blessed to call them their own children know this as a fact.</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC"><font color="#ff0000">because we are blessed</font>.</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">whether or not brynlee’s cf will hospitalize her, or cause her bumps in her journey, or whether it will simply be two initials that cause us to go to a clinic once a month is yet to be known, but either way…brad and I are called to love her, care for her, and raise her as if those two initials didn’t define her. because they don’t. brad and I, and all other parents of cf children are blessed beyond belief. not everyone is strong enough to carry that burden, but we are. we were chosen…picked from a crowd of millions and millions of people, because we alone are strong enough to handle it. what an awesome privilege! what a blessing.</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">emotions come and emotions go…any diagnosis brings upon a sort of mourning or grief over what we thought we were getting into. I’m humbled to have a second chance to kick this diseases ass (pardon my french, but CF knows I’m fighting to win), to add a beautiful daughter to our family, and to honor Conner’s battle by watching Brynlee thrive and provide every single treatment possible for her, and this time around no is not an answer. we’ve seen the bad…we’ve lived thru the ugly but this time around we see a cure. we see victory. and just as her name suggests…in brynlee we see nothing but</font></p> <p><font color="#62acb9" size="7" face="Bradley Hand ITC">HOPE</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">I dare you to truly LIVE…God did not give us a spirit of FEAR…but one of HOPE and assurance…</font></p> <p><font color="#62acb9" size="4" face="Bradley Hand ITC">hold on to his promises…</font></p> <p><a href="http://lh3.ggpht.com/-uBGpcq0aOFs/UFZKfDGYNII/AAAAAAAABWA/ZFQsGJWNkWM/s1600-h/IMG_9814%25255B6%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="IMG_9814" border="0" alt="IMG_9814" src="http://lh4.ggpht.com/-rYYmsxDXIdc/UFZKf_nWQRI/AAAAAAAABWI/Dtd-yT0phnU/IMG_9814_thumb%25255B3%25255D.jpg?imgmax=800" width="282" height="422" /></a></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com11tag:blogger.com,1999:blog-3753922795485552054.post-14246158057350871502012-09-14T19:14:00.001-07:002012-09-14T19:14:15.752-07:0026 days…<p><font color="#d88bbd" size="4" face="Bradley Hand ITC"><a href="http://lh3.ggpht.com/-_n0apSeuFaQ/UFPkT19QZII/AAAAAAAABSk/IqROxzs8y88/s1600-h/IMG_9684%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="IMG_9684" border="0" alt="IMG_9684" src="http://lh6.ggpht.com/-1iMi-RKxKo4/UFPkUJuS4JI/AAAAAAAABSs/BaLMst3EytY/IMG_9684_thumb%25255B1%25255D.jpg?imgmax=800" width="408" height="273" /></a></font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">What a journey these past two months have been for our family. Brynlee joined our family the 11th of July, but did not join our home until August the 6th. Our hearts have fluctuated from being full of love with her arrival, to the fullness of fear a day after she was born. She arrived in a hurry, and we spent that Wednesday evening and Thursday morning loving on her…but I knew something wasn’t right.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">Brads working shift work, so he was sleeping much of that Wednesday evening and I didn’t want to wake him incase I was simply overreacting. but she wouldn’t eat, she acted hungry, but couldn’t eat. she started vomitting…first clear which could be completely normal after being face up in the birth canal…but then it started changing to yellow and to green. she couldn’t lay flat, she just kept choking on her vomit. and by Thursday morning I was telling the nurse all of these symptoms and I added to it that she hadn’t pooped yet. our nurse took a look on her face of a calm panic. I never knew there was such a face…but that’s exactly what it was. </font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">she quickly left the room and came back with a suppository…two suppositories…then even spent 10 minutes with a thermometer trying to stimulate her bowels to poop. she tried to help me get her to eat. </font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">nothing.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">she called the pediatrician (who I wont go into detail but he was less than impressive) and we urged him to take an xray. so he reluctantly did. two words and most of you will know exactly the ending of this blog…</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC"><font color="#0000ff"><strong>MECONIUM ILEUS</strong></font>.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">After seeing the xray the Pediatrician immidiately called Doernbecher Panda Ambulance team to come for our newborn daughter. Everything happened so quickly. I remember just crying. brad of course was awake and knew what was going on and he just sat by me and I just sobbed. the only thing running thru my head was how mad I was that God was going to take another child from me. she was sick. I couldn’t help but to think she was dyeing. I could not stop crying.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">I will spare many details because I will link her Caring Bridge site <a href="http://www.caringbridge.org/visit/brynleehope" target="_blank">HERE</a> so you can go there to get all the details of her journey (you have to create a login)</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">But long story short…we tried for 5 days to get the meconium to unblock…to no avail…by monday, at 5 days old our sweetie was rushed to surgery. and the next few weeks we spent giving her TPN for nutrition, praying her GI would start working, teaching her to feed and then ultimately received the genetic test results that she infact has</font></p> <p><font color="#ff0000" size="4" face="Bradley Hand ITC">CYSTIC FIBROSIS…</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">yES… the disease that stole our son now has it’s grips on our sweet daughter.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">26 days we spent in the NICU, not many people knew. Our hearts are just now at a place of full acceptance and somewhat of peace. We’ve been home a month now…her first month was a blur…where once again that life that we thought we left behind came back to haunt us. I was with Brynlee 50 miles from our home, in the same hospital, with the same nurses and Dr’s who cared for Conner…which was extremely difficult…while my husband and our sons were at our home…trying to make sense of it all…</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">I will leave this post now with some pictures from her first month.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">This is why there was not many pictures on facebook…she had too many tubes and IV’s that I couldn’t crop them out…we really appreciated the space and time to process…</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">she’s our warrior…</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">and while our hearts are so broken…she is a joy. I’m thankful she was diagnosed a full year before Conner ever was…so therapies have already begun and she has been to the CF clinic twice already in a month and we as of now are focusing on her nutrition. in her we are HOPEful…and just know that Conner was with us in that NICU, the same one he was in at birth…he showed himself to be there with her beautifully…in ways way too beautiful to share…so in the pain of it all…there was a lot of love…</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">Be blessed…</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">(in order from first born and on…)</font></p> <p><a href="http://lh3.ggpht.com/-uQmDIv0z8Kk/UFPkUpH5SAI/AAAAAAAABS0/QSgvviHDSAM/s1600-h/062%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="062" border="0" alt="062" src="http://lh5.ggpht.com/-HK2PyQSHnsE/UFPkVMwp-qI/AAAAAAAABS8/s6b48s2gQLg/062_thumb%25255B2%25255D.jpg?imgmax=800" width="283" height="423" /></a></p> <p><a href="http://lh6.ggpht.com/-U5xYmXezZK4/UFPkVRlZz-I/AAAAAAAABTE/il3hCAos31I/s1600-h/074%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="074" border="0" alt="074" src="http://lh4.ggpht.com/-747hfsqGvww/UFPkVwBJEiI/AAAAAAAABTM/h8EAPgJSNOA/074_thumb%25255B2%25255D.jpg?imgmax=800" width="413" height="277" /></a></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC"><a href="http://lh6.ggpht.com/-sJGgAc1rG_4/UFPkWIx-G8I/AAAAAAAABTU/JMeIpRzjIgE/s1600-h/088%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="088" border="0" alt="088" src="http://lh6.ggpht.com/-xg-hjYFqcss/UFPkWRYBmwI/AAAAAAAABTc/Zyp0i7NGi8E/088_thumb%25255B2%25255D.jpg?imgmax=800" width="416" height="279" /></a></font></p> <p><a href="http://lh3.ggpht.com/-anbWAWqHSio/UFPkW0pQixI/AAAAAAAABTk/lKv1tevf1oM/s1600-h/103%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="103" border="0" alt="103" src="http://lh3.ggpht.com/-H5YX9cJPhcU/UFPkXTLWNYI/AAAAAAAABTs/0-15f2Lzg3w/103_thumb%25255B2%25255D.jpg?imgmax=800" width="427" height="286" /></a></p> <p><a href="http://lh6.ggpht.com/-TGVy5yxNXG4/UFPkX_A_M-I/AAAAAAAABT0/t9boKFS_ZlE/s1600-h/113%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="113" border="0" alt="113" src="http://lh5.ggpht.com/-nta2V-VAxNQ/UFPkYGtVjoI/AAAAAAAABT8/2Wr8nzS57sA/113_thumb%25255B2%25255D.jpg?imgmax=800" width="436" height="292" /></a></p> <p><a href="http://lh5.ggpht.com/-3EvF1kFAmDc/UFPkYn63WfI/AAAAAAAABUE/5Cmkhv_vQCo/s1600-h/120%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="120" border="0" alt="120" src="http://lh4.ggpht.com/-YdKJ1-722dE/UFPkZKK8p8I/AAAAAAAABUM/oCtZb0xRTp8/120_thumb%25255B2%25255D.jpg?imgmax=800" width="440" height="294" /></a></p> <p><a href="http://lh4.ggpht.com/-urQHW126czQ/UFPkZQEjVgI/AAAAAAAABUU/fOcGtXCeNH4/s1600-h/130%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="130" border="0" alt="130" src="http://lh6.ggpht.com/--mo8qxuiFCc/UFPkZ30LPxI/AAAAAAAABUc/sjE4WhaKIyQ/130_thumb%25255B2%25255D.jpg?imgmax=800" width="435" height="291" /></a></p> <p><a href="http://lh6.ggpht.com/-2aYnCu07T8Q/UFPkaTGZVzI/AAAAAAAABUk/-biwk-TCLa0/s1600-h/141%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="141" border="0" alt="141" src="http://lh3.ggpht.com/-lsUse0cR0T8/UFPkagX5EiI/AAAAAAAABUs/Qj1U7xaeQAg/141_thumb%25255B1%25255D.jpg?imgmax=800" width="217" height="323" /></a></p> <p><a href="http://lh5.ggpht.com/-KxaXdM5FeuY/UFPkbMf5rOI/AAAAAAAABU0/sWR5oO0A3Vs/s1600-h/144%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="144" border="0" alt="144" src="http://lh6.ggpht.com/-BdrS7liLniI/UFPkbXLZlbI/AAAAAAAABU8/QUmAhyp2PyU/144_thumb%25255B1%25255D.jpg?imgmax=800" width="215" height="321" /></a></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC"><a href="http://lh4.ggpht.com/-0Xuqg_crcFc/UFPkbyTl3uI/AAAAAAAABVE/DgrjotOh7XY/s1600-h/190%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="190" border="0" alt="190" src="http://lh4.ggpht.com/-1BZlo1H9QWI/UFPkcFuUwHI/AAAAAAAABVM/oVGCGp1RZsI/190_thumb%25255B2%25255D.jpg?imgmax=800" width="427" height="286" /></a></font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC"><a href="http://lh5.ggpht.com/-NLKAQfzEcIc/UFPkcnDHy4I/AAAAAAAABVU/pB6B7YtjzpQ/s1600-h/006%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="006" border="0" alt="006" src="http://lh6.ggpht.com/-o6BHcV0Auk4/UFPkc0FrgyI/AAAAAAAABVc/9d8HnYz0a_U/006_thumb%25255B2%25255D.jpg?imgmax=800" width="264" height="394" /></a></font></p> <p><a href="http://lh6.ggpht.com/-cmsK0jjOvf4/UFPkdTrx9YI/AAAAAAAABVk/Xj7qX7xelag/s1600-h/031%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="031" border="0" alt="031" src="http://lh3.ggpht.com/-o8ZVH0twRJg/UFPkdt0xr3I/AAAAAAAABVs/PjhXvmD7vA8/031_thumb%25255B2%25255D.jpg?imgmax=800" width="265" height="395" /></a></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">her beautiful “birth mark” will always prove to those who know her just how strong she really is!</font></p> <p><font color="#ff0000" size="5" face="Bradley Hand ITC">Love Love Love</font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com22tag:blogger.com,1999:blog-3753922795485552054.post-28980017494573682252012-09-05T13:40:00.001-07:002012-09-05T13:40:31.735-07:00Miss Brynlee…a blessing in the rain…<p><a href="http://lh4.ggpht.com/-PC4kjJkmMQs/UEe4kJXkz3I/AAAAAAAABRE/En6qERYKhAw/s1600-h/012%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="012" border="0" alt="012" src="http://lh4.ggpht.com/-fHpuLrrfqAM/UEe4kgSGrHI/AAAAAAAABRM/fp3fKakWrBE/012_thumb%25255B1%25255D.jpg?imgmax=800" width="491" height="329" /></a></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">July 11, 2012 marked a day that we will never forget as long as we live. My due date was the day prior, and upon seeing my Dr. and being 5cm dilated and not officially in labor, we decided to induce the following morning. Brad and I checked in at 7am (early!) and got the IV placed and set up for monitoring. Turns out I had started having contractions every 5 minutes but they weren’t painful, just a little uncomfortable. at 9am my dr came in and broke my water to get the induction rolling, we decided not to do IV Pitocin and to let my body see if it would get the ball rolling….and it did. I was visiting with my mom, my friend Trish and brad and around 10:30 I felt like the contractions were getting to the point where they were serious. I had the nurse check me and she said I was about 6.5cm dilated so I decided to have her call the anestisiologist to get some IV pain meds since I felt it was going to be awhile still….</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">well I was wrong.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">about half hour after being checked I got up to go to the bathroom and BOOM! it was just what she needed to descend farther. I got back in bed and was in instant pain. intense pain…like don’t talk to me or I’ll bite your head off type pain (but I kept that to myself <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-smile" alt="Smile" src="http://lh5.ggpht.com/-LdIWQo2_-1s/UEe4pLMl-JI/AAAAAAAABRU/8xQUvYs4dbQ/wlEmoticon-smile%25255B2%25255D.png?imgmax=800" />) because when I’m in pain, I get very, very quiet and focused. the nurse rechecked me and within that 20 minutes I had gone from 6.5cm to fully dilated and a baby on the way! the anesisiologist came in and was able to place an epidural (very, VERY slowly and a little too chipper I might add)…doesn’t she realize it’s nearly IMPOSSIBLE to hold still during contractions that only have 20 seconds between them…STOP talking and start working lady! sheesh…anyway…the epidural was placed BUT never worked. I progressed too quickly and my dear baby was face up causing intense back pain, and being bone on bone like that blocked the epidural from working. lovely. it was a nice thought though…</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">so I started pushing and the room filled with people from the nursery etc and before I knew it my baby girl was laying on my chest and I felt instant relief. I did check to make sure she was infact a she…and I was shocked that she was an entire POUND lighter than both Hunter and Bradyn. She was 7.5pounds and 20.5inches long, born at 12:21 with an epidural that took effect immediately AFTER she was delivered hehehe…so I guess I got my monies worth <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-smile" alt="Smile" src="http://lh5.ggpht.com/-LdIWQo2_-1s/UEe4pLMl-JI/AAAAAAAABRU/8xQUvYs4dbQ/wlEmoticon-smile%25255B2%25255D.png?imgmax=800" />. </font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC"><a href="http://lh4.ggpht.com/-w8xKKaHsSUs/UEe4rQxTAgI/AAAAAAAABRc/1JcZuvW25rA/s1600-h/016%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="016" border="0" alt="016" src="http://lh3.ggpht.com/-SaSCZ491-Qg/UEe4tRZOIkI/AAAAAAAABRk/QJI4kAGK8N8/016_thumb%25255B2%25255D.jpg?imgmax=800" width="460" height="308" /></a></font></p> <p><a href="http://lh5.ggpht.com/-oGIV_G1c-Bs/UEe4tpZPZPI/AAAAAAAABRs/bPeJ8oi6yY4/s1600-h/042%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="042" border="0" alt="042" src="http://lh6.ggpht.com/-jCWmdRS0ioU/UEe4uFmyAjI/AAAAAAAABR0/UIIA2GwKVuE/042_thumb%25255B2%25255D.jpg?imgmax=800" width="457" height="306" /></a></p> <p><a href="http://lh6.ggpht.com/-MFgPBcsk9j4/UEe4ua6Fn7I/AAAAAAAABR8/Tvrc7jb7jmo/s1600-h/043%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="043" border="0" alt="043" src="http://lh3.ggpht.com/-WCab9oRHgCQ/UEe4u4FcfWI/AAAAAAAABSE/hbBLP2lSYBc/043_thumb%25255B2%25255D.jpg?imgmax=800" width="459" height="307" /></a></p> <p> </p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">She is such a love and we can’t imagine our lives without her in it! It’s like she’s always been here! We all adore her…and now we’re a beautiful family of 5 PLUS one <3 <3 <3 Connerman couldn’t have hand picked a more perfectly beautiful addition to our family. She looks just like him at birth…and in other pictures she looks just like both Hunter and Bradyn as well. A perfect combination!</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC"></font></p> <p><a href="http://lh5.ggpht.com/-vuX4zkuFQEQ/UEe4vKLpnpI/AAAAAAAABSM/zaPmh5k6Yb0/s1600-h/018%25255B7%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="018" border="0" alt="018" src="http://lh3.ggpht.com/-MbwrIseOaZw/UEe4vpB9nAI/AAAAAAAABSU/QuqixgOYvOE/018_thumb%25255B4%25255D.jpg?imgmax=800" width="342" height="511" /></a></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com8tag:blogger.com,1999:blog-3753922795485552054.post-4778178670594663902012-07-09T09:57:00.001-07:002012-07-09T09:57:44.779-07:00No coincidences…<p><strong><font color="#d88bbd" size="3" face="Segoe Script">I just had to share…I don’t believe in coincidences, I believe in Gods plan. Everything is part of a bigger plan…there’s no way this could’ve been orchestrated…</font></strong></p> <p><strong><font color="#d88bbd" size="3" face="Segoe Script"></font></strong></p> <p><strong><font color="#62d1e6" size="3" face="Segoe Script">Two years ago as I was sending my beautiful son to heaven saying <font color="#ff0000">LOVE LOVE LOVE</font> I could’ve never imagined that here I sit, two years later getting ready to welcome a daughter…his sister…who he named (middle name) <font color="#ff0000">7</font> years ago. Adding to our family in the <font color="#ff0000">7</font>th month of the year, whose birthstone is <font color="#ff0000">RED</font>. </font></strong></p> <p><strong><font color="#62d1e6" size="3" face="Segoe Script">and COOLEST part of all…today Bath and Body Works introduced a new lotion…I mean SHUT UP RIGHT??!!! And I received mine in the mail last week before it hit the shelves…I couldn’t have put this all together more perfectly myself…</font></strong></p> <p><a href="http://lh6.ggpht.com/-NSyUhlmTW9w/T_sNhFD-GoI/AAAAAAAABQw/Gw4IC06w_dE/s1600-h/016%25255B8%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="016" border="0" alt="016" src="http://lh3.ggpht.com/-XmWiHeL_lFk/T_sNh2wsnzI/AAAAAAAABQ4/bKa81HHG50Y/016_thumb%25255B5%25255D.jpg?imgmax=800" width="362" height="541" /></a></p> <p> </p> <p><font color="#d88bbd" size="3" face="Segoe Script">So I’m just awaiting her arrival…smelling of <font color="#ff0000">LOVE LOVE LOVE</font> in a month of RED birthstones…</font></p> <p><font color="#d88bbd" size="3" face="Segoe Script">coincidence? I think <strong>NOT</strong>!!!!!!!!!!!!!</font></p> <p><font color="#d88bbd" size="3" face="Segoe Script"></font></p> <p><font color="#d88bbd" size="3" face="Segoe Script">love love love</font></p> <p><font color="#d88bbd" size="3" face="Segoe Script"></font></p> <p><font color="#d88bbd" size="3" face="Segoe Script">**btw I am not endorsing the above mentioned product, I’m simply giving God a SHOUT out for his plan and blessings..**</font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com2tag:blogger.com,1999:blog-3753922795485552054.post-37101494018892854582012-06-26T16:41:00.001-07:002012-06-26T16:41:15.861-07:00In my weakness I am strong…<p><font color="#d88bbd" size="4" face="Bradley Hand ITC">Oh I hope you know that I don’t consider myself wise in the least, or claim to have all the answers. I simply share my heart and what I consider to be the truths in my circumstances. I wish there was a way to have all the answers and to walk childloss with a degree in grief and emotions…but life doesn’t work that way. we do the best we can with the best that we have, and if we believe, we live in grace and hope for our futures, and we accept pain as part of living and that just because we believe doesn’t make us exempt from even the toughest tasks.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">watching Conner deteriorate I never expected how God would use this story, this journey as a ministry. and I’m still so surprised hearing how it changes the course of so many people, I just never fathomed that. I get messages about how sharing our journey is touching people all over the country and world in some cases, and honestly, as much as our story may inspire others, each time I hear of what its meant for someone I’ve never met it ministers to me equally as it does them. how powerful and perfectly planned out is this all. almost daily I get messages about how Conner popped up all across the country in different ways and it just gives me such joy. he is an amazing child, that I already knew, but I never could’ve expected all of this.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">sunday marked two years without him, and that day…well I’m glad it’s over and behind us for another 363 days…I haven’t been able to even read all the love and messages sent to my facebook because each time I try to, facebook freezes and kicks me off…isn’t that amazing? a seven year old boy…a mothers great joy and greatest pain has the ability to cause my computer it’s own grief! it can’t keep up, and neither can i. I gaze at his pictures scattered around the house and I just stare into those black brown eyes with wonder. how much of this had he known? I wonder if he knew his calling before he left…I believe he did. I wished I had recorded some of our conversations, on the way to the hospital in those last months, the questions he’d ask…and in the quiet night in his hospital bed, how he’d call out for me next to him and the peace he had in the midst of great physical pain. how he knew and told people in his last weeks that they had to know Jesus to be with him again in heaven…how he was in such pain in his final week but he was determined to do the things his brothers loved most even though he was in such terrible pain…like he needed that last moment. it was so beautiful. the peace that overcame his face when he awoke that final day from his “coma” there was no fear in his eyes, and he seemed to gaze thru and beyond us…perhaps seeing where he was going. he wasn’t afraid, he wasn’t panicked..we were…he was peaceful. </font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">brad and I knew from the very beginning of the pregnancy with him that it was special, we knew the odds stacked against us and each dr appt added another diagnosis or problem, yet we fought anyway. he chose us, so we chose him back. I’m so glad we did. his life was truly a miracle, and his death is a legacy of love and hope that even in the worst of it all, god never fails. that no pain is without great purpose. beyond anything imaginable. not easy…but worth it.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">from day one I hid behind my smile, I didn’t cry or let emotions overcome me…I had to be “strong” for conner and my family. For seven years I was like stone. if asked, I was always ok, things were always fine and crying was something “weak” people did. oooohhh……how foolish I was. being a mom of a kid with a terminal illness, I understand there has to be some seperation of emotion so you’re able to function, to get the meds and treatments done, to be strong when our kids are in pain and you just want to take it all away, but there’s beauty and significance in also being vulnerable…wish I knew that then. I thought I was strong…no no no, Conner in all his smiles, tears and raw emotion was the strong one, I was a fake. </font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">if I could impart any one thing to those in similar circumstances it would be to be authentic. your tears won’t scare your children…quite the opposite actually. hunter struggled so greatly in the beginning of his grief journey because he had such scary, BIG emotions that he didn’t know what to do with. he never saw us cry so he held it all in just as we modeled for him. what a disservice we did. I know how I felt like I was going to explode, that my heart felt like it literally was about to burst from my chest I was in such intense pain…and my sweet 5 year old I’m sure felt just as much pain if not maybe more, losing his best friend and having no way to cope. thinking tears weren’t ok, when they were what he needed. it came out in other ways and luckily we learned to help him cope, we, ourselves learned how to be open to emotion and to cry. crying, it turns out is very powerful, emotions are important and faking it or hiding behind a stone face is what weak people do…without even knowing it. I still struggle with letting myself cry, and I catch myself starting to cry when hunter or bradyn is near and I try to wipe them away quickly so they’re not seen…then I remember that pretending is just a nicer word for lyeing. my kids need to see how to handle emotion, my sons need to know that it’s ok to cry, that strong people aren’t afraid of their tears. well hunter did catch me the other day. and it led to a great conversation about all the things we missed most about Conner and life with him here. it was beautiful. had I not been vulnerable to my emotions, hunter would’ve felt like he needed to keep his emotions and thoughts to himself. and when I think about our number one job as parents is to raise our children to be the best adults they can possibly be, I realize that i was raising up a boy who would’ve been emotionally unavailable, cold, quiet and in deep pain. all because I thought I was being strong.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">wow.</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC"><strong>1 Corinthians 1:25, "For the foolishness of God is wiser than man's wisdom, and the weakness of God is stronger than man's strength." </strong></font></p> <p><strong><font color="#d88bbd" size="4" face="Bradley Hand ITC"></font></strong></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC">crying may not be fun, but it’s necessary…that’s one thing I know for sure…</font></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC"></font></p> <p><strong><font color="#d88bbd" size="4" face="Bradley Hand ITC">Love Love Love</font></strong></p> <p><font color="#d88bbd" size="4" face="Bradley Hand ITC"> </font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com3tag:blogger.com,1999:blog-3753922795485552054.post-80224998128875387672012-06-18T18:29:00.001-07:002012-06-18T18:29:08.892-07:00Your last week here…<p><font color="#8080c0" size="4" face="Bradley Hand ITC">Well my dear it’s been two years in the making. I feel the need to just write you all the things I’ve been wishing I could tell you these past two years you’ve been gone. gone. that’s a word that used to not carry any meaning to me, gone used to mean temporarily unavailable, but not permanent. like gramma is gone now…but we all knew we’d see her again on her next visit. well my dear you redefined that. gone is forever. gone is breathtaking. gone is permanent. gone is a word that should not be in any parents vocabulary. </font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">it’s the beginning of that week. I hate this week. each day holds a horrible memory. a painful one. a week and a half ago, Hunter had field day at his school just like you did a week and a half before you died. I couldn’t bring myself to go with him this year. maybe next year I’ll be stronger, maybe I won’t. I won’t make any guesses or promises, I’ve learned not to assume a specific time table will bring any relief from pain. I remember taking you to see your first grade friends that last day, how you wanted to play with them but you delighted in watching them play. what a miracle that day was.</font></p> <p><a href="http://lh3.ggpht.com/-fOp1TKze_-s/T9_VyqDVplI/AAAAAAAABOs/1QC4WwdH7LA/s1600-h/022%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="022" border="0" alt="022" src="http://lh3.ggpht.com/-PTVFELLmGxY/T9_VzAFn7RI/AAAAAAAABO0/qgvPrbEKO_k/022_thumb%25255B2%25255D.jpg?imgmax=800" width="290" height="384" /></a></p> <p><a href="http://lh6.ggpht.com/-vgRuVZBY6k0/T9_VzsNEy3I/AAAAAAAABO8/FfI8D2XN11A/s1600-h/036%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="036" border="0" alt="036" src="http://lh3.ggpht.com/-wwt0UVhHlxo/T9_V0BhPfjI/AAAAAAAABPE/peivSfONU8Y/036_thumb%25255B2%25255D.jpg?imgmax=800" width="290" height="386" /></a></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">what a precious smile you had. </font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">seeing your friends play and laugh brought you such joy, you never did feel sorry for yourself, you just kept doing what your broken body would allow you to do, and you never complained. I honestly can’t say that I’d be able to do the same. your positive attitude always inspired me. so wise for seven years old. I can only hope to grow up to be more like you.</font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">it saddens me to think about this joy you had then only 12 or so days later you were gone. </font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">gone.</font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">how did it all happen so fast? or was I just not paying attention? or in denial? what's crazy is you know all the answers now…and I have to just keep wondering until I get to where you are. so far away…yet just one breath away. how amazingly close and so far away it seems.</font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">I know you can’t be too far because you are constantly sending love to us. I never imagined that part. that makes you seem so close…but I can’t see you. I wonder how you look now, if your still seven, or if you are now 9 like you should be. in my heart I feel like your still the same Conner you were when you left us since you were only seven, but that you still have bdays. I imagine you don’t physically get older, but wiser perhaps. I can hear your voice still not being able to say your r’s…and your sweet voice still so young and innocent. I can only guess for now. because you’re gone.</font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">Bradyn is so big now…he prays for you each night before dinner and before bedtime. but you know that already. I wonder what he remembers of you. when he speaks sometimes I hear you in his voice. </font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC"><a href="http://lh3.ggpht.com/-YDSBBfRnmsg/T9_V0aVWSoI/AAAAAAAABPM/Vp_G_gIszgM/s1600-h/013%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="013" border="0" alt="013" src="http://lh3.ggpht.com/-CmcrxVXOBhY/T9_V0pNZE3I/AAAAAAAABPU/gwi6k8vOViA/013_thumb%25255B1%25255D.jpg?imgmax=800" width="273" height="363" /></a></font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">and sometimes I glance at pictures of Hunter and I see you in him. </font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">Hunters wearing your last clothes now. that’s hard to see, yet it brings such joy to Hunter. He is so proud to be your brother, and he loves you madly. that’s a very special bond you two share, I know Hunter cherishes it and he misses you like crazy. </font></p> <p><a href="http://lh5.ggpht.com/-cgcY8PdgZgI/T9_V1NTBSzI/AAAAAAAABPc/jfNqUGgOpoM/s1600-h/022%25255B10%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="022" border="0" alt="022" src="http://lh3.ggpht.com/-kSCMAI69HGs/T9_V1e8G6lI/AAAAAAAABPk/AYJL3eI2EXc/022_thumb%25255B4%25255D.jpg?imgmax=800" width="427" height="321" /></a></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">Next week is VBS here, and two years ago you died on the second day of vbs. I just hate this time of the year. every single day until june 30th when we laid you to rest holds pain that can’t be ignored. plus I’m so hormonal these days with the ending of this pregnancy that its even more exaggerated this year. well that and I feel like the second year was far worse than the first one. because the first year gone still means coming back…but not anymore. gone is the greatest curse word now.</font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">a year ago I watched you deteriorate every single day for a week. I saw it but I didn’t accept it. why should I have? it’s not natural. I prayed fervently for your healing, for your miracle…little did I realize your miracle would be to leave. your body could never physically be healed in this world…I just didn’t want you to go…but I didn’t want to see you suffer anymore either…</font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">The pain you carried in your eyes and the exhaustion your body endured that last week broke me into pieces…</font></p> <p><a href="http://lh3.ggpht.com/-tmSYp5CWr5g/T9_V18BoiUI/AAAAAAAABPs/7zxgubnNis8/s1600-h/028%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="028" border="0" alt="028" src="http://lh5.ggpht.com/-EQYiC_1eUt0/T9_V2LPxDmI/AAAAAAAABP0/1q3YeBwzv90/028_thumb%25255B1%25255D.jpg?imgmax=800" width="400" height="301" /></a></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC"><a href="http://lh3.ggpht.com/-Fa-na-2vOm4/T9_V3PiXdvI/AAAAAAAABQA/ubYaiaCWl6E/s1600-h/037%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="037" border="0" alt="037" src="http://lh4.ggpht.com/-D3_EdlYE1dY/T9_V3mEW1II/AAAAAAAABQI/voW-o9ubvMk/037_thumb%25255B2%25255D.jpg?imgmax=800" width="400" height="301" /></a></font></p> <p><a href="http://lh5.ggpht.com/-bSMW5_FAVXY/T9_V4C81wYI/AAAAAAAABQQ/cAMIX6s4QAc/s1600-h/370%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="370" border="0" alt="370" src="http://lh6.ggpht.com/-EWA_hwaZZLk/T9_V4c4pYtI/AAAAAAAABQY/KnzlgDuviFA/370_thumb%25255B2%25255D.jpg?imgmax=800" width="297" height="394" /></a></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">damn that disease! it just kills me to see you in such pain. I would’ve given anything to go thru that instead of you. </font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">I had so much more to say…but my heart is so broken right now that my mind is blank. I miss you buddy. </font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">I will leave you with the song that is helping me thru lately…</font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">I love you immensly bubby…and I miss you with every fiber of my being. I’d give anything to just hug you…one more moment. </font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC">gone is the cruelest of realities…</font></p> <p><font color="#8080c0" size="4" face="Bradley Hand ITC"></font></p> <div style="padding-bottom: 0px; margin: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: none; padding-top: 0px" id="scid:5737277B-5D6D-4f48-ABFC-DD9C333F4C5D:231e1a02-be15-43f0-9f76-a5753a7a2ae7" class="wlWriterEditableSmartContent"><div id="66b832ae-e7b5-46ab-816c-6da2ff29bee9" style="margin: 0px; padding: 0px; display: inline;"><div><a href="http://www.youtube.com/watch?v=3xzaivDbu9c" target="_new"><img src="http://lh4.ggpht.com/-1v8ABkT-WDc/T9_V4h2a0AI/AAAAAAAABQc/hQ1iN9ZiGYc/videobafc5a87f28f%25255B3%25255D.jpg?imgmax=800" style="border-style: none" galleryimg="no" onload="var downlevelDiv = document.getElementById('66b832ae-e7b5-46ab-816c-6da2ff29bee9'); downlevelDiv.innerHTML = "<div><object width=\"448\" height=\"252\"><param name=\"movie\" value=\"http://www.youtube.com/v/3xzaivDbu9c?hl=en&hd=1\"><\/param><embed src=\"http://www.youtube.com/v/3xzaivDbu9c?hl=en&hd=1\" type=\"application/x-shockwave-flash\" width=\"448\" height=\"252\"><\/embed><\/object><\/div>";" alt=""></a></div></div></div> <p><font color="#8080c0" size="4" face="Bradley Hand ITC"> </font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com4tag:blogger.com,1999:blog-3753922795485552054.post-52442260545844020552012-05-31T10:53:00.001-07:002012-05-31T10:53:09.987-07:00Roller Coaster of life…<p><font color="#62d1e6" size="5" face="Bradley Hand ITC"><a href="http://lh6.ggpht.com/-5BhxyAoK1Ek/T8ewAwGbWCI/AAAAAAAABOY/pBowqkJhuSA/s1600-h/rollercoaster%25255B3%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="rollercoaster" border="0" alt="rollercoaster" src="http://lh5.ggpht.com/-5qc0-wSOQ8Q/T8ewBcmw5PI/AAAAAAAABOg/ybxCbZOSpHE/rollercoaster_thumb%25255B1%25255D.jpg?imgmax=800" width="333" height="297" /></a></font></p> <p><font color="#62d1e6" size="5" face="Bradley Hand ITC">I remember a time where I’d read different books or different blogs written by parents who have lost a child…and I remember being a bit envious when I’d see how long it had been since their child past. like they survived it, that they were still alive 2 years later even 5 years afterwards. I remember thinking how great it’s going to be to be in that position and to be free from pain and the constant emotional ups and downs associated with it all. yet why is it that we’re closing in on the 2 year mark and nothings changed? Conner is still on my mind all day long. I think of him with every activity we do or plan just as if he were still here and I needed to make the necessary arrangements. I laid awake last night which I’ve grown used to being 34 weeks pregnant…but it wasn’t because I was up to go to the bathroom or because I was uncomfortable, I was up thinking about all the medical stuff that seemed to have left my memory. it was strange. maybe that’s the only thing that has really changed in our lives these past years. there’s no more medical equipment scattered around our home, we don’t have to constantly plan out each day the day before, get the necessary enzymes, puffs, oxygen tanks, bolus extensions and formula and extra supplies that we once had to. I don’t have to park in handicapped spots and rush from the car inside our home to hook Conner up to the more reliable oxygen concentrator. I’m not going back and forth to CF, urology, GI and peds appts with him, nor am I having to plan for my other kids care because of the monthly hospitalizations. Two years, I just can’t believe it’s been two years. it sounds like such a long time, yet when it comes to being without Conner it feels like it was just yesterday. that time table doesn’t translate into childloss. </font></p> <p><font color="#62d1e6" size="5" face="Bradley Hand ITC">I feel such a struggle in my heart most days…where I’m feeling alright…but then Conner’s missing presence is always in the back of my mind. so hard to explain. best way I can is it’s like you know when you have a list of things you need to do for the day, you wake up, think about it, make a mental plan on how to get it done…and it stays in your mind so you can complete it. that’s conner to me. I wake up and realize he’s gone instantly each morning when I look at his beautiful face staring at me, I get up and get the boys going for school and think about what I’d be doing for conner that moment as far as treatments, or even waking him up with kisses and rubs like I do for my other ones, I drop my kids at school and think about how conner should be there too, everything. he’s always in my mind. and somedays its too much to take, while others I just push thru it and make it thru the day. how can it still be so hard nearly 2 years later? </font></p> <p><font color="#62d1e6" size="5" face="Bradley Hand ITC">Today I’m trying to get life in order for our baby girl due to arrive in about 6 or so weeks from now, yet I’m distracted. I feel such joy for her impending arrival…I know Gods hand and Conner’s sweet blessing are upon this baby and her arrival, everything makes such perfect sense. I just realized not too long ago her birthstone will be red (conners favorite color), so that’s just one more little gift from Conner so he’s always with us. But in the back of my mind I worry. I have the usual pregnancy nervousness at the end, trying to tie up loose ends, get things in order, and of course think about delivery and pray for a safe arrival, yet there’s more this time weighing me down. while I can’t wait to see her beautiful face and meet her…my heart is scared to death of how I will react if she looks like Conner. I know she will look like all of us, but I’m afraid it’ll be too much. I know as an absolute truth one new arrival doesn’t make the loss of one at all easier, they’re two different joys and blessings…but adding to our family with all these similiarities to Conner may be too much. I hope not. but if I’m being honest, that’s where my heart is lately. worrying. I’m afraid of being overwhelmed again because she’s due to arrive so close to Conner’s angelversary, that it may just be too much and I may break emotionally. I pray that I’m just overly preparing my heart for all possibilities. I’m so excited to have her here, to have a new joy, and at the very same time I’m scared of how we’ll adjust to all the similiarities emotionally. conner should be here. he shouldn’t be in heaven making these hopes a reality, he should be here…he should be 9, the biggest brother to three younger siblings, living, breathing. so hard to explain. it’s such a roller coaster….one moment I’m content, the next I’m sad, the next I’m worried, the next I’m excited…all in the span of a minute it seems. and I just pray that emotionally I’ll be ok and I’m just overly worrying about it now so that when she comes I’m ok. I know whatever comes, that God will carry me thru, he’s proved that to me more than I could ever explain. so I am trying to just cast my worries and concerns onto him, openly, honestly, and taking refuge in his peace.</font></p> <p><font color="#62d1e6" size="5" face="Bradley Hand ITC">yet thru it all I’m still standing. </font></p> <p><font color="#62d1e6" size="5" face="Bradley Hand ITC">so I need to give myself some credit for that. I’ve made the decision from day one that God is in control, I’ve allowed Him to lead me thru this emotional mess, I’ve followed his lead and allowed myself rest and given myself grace in his love, all of which are absolutely choices. I know, and I’ve seen some, go the other way and tried to get thru their grief alone, and I’ve seen their desperations. I too, feel desperate some days, and I feel pain, and I feel anger…but it doesn’t get the better of me, I allow myself these feelings and I give myself grace because I know that with God in my corner I’ll pull thru. </font></p> <p><font color="#62d1e6" size="5" face="Bradley Hand ITC">The whole point of me starting this blog over 2 years ago was to be transparent in the good, bad and UGLY, and to just be fully honest in my feelings. So I can’t possibly pretend all is “bright and shiny” all the time. Many have reached out to me thru this blog, I still receive emails and letters from people just finding Conner’s story and thanking me for the transparency, and I hear how it’s ministered to so many people going thru similar and not at all similar situations. So I just know in my heart that my feelings about this sweet girls arrival have to be honest as well. just knowing that by revealing my pain and my pursuit of happiness and joy is in some way helping even a handful of people, makes the pain more manageable. because it just shows it’s not about me. this pain wasn’t directed at me, to punish me and hurt me, or to break me. it was to help others and find strength thru it, find joy, go thru all the ups and downs and ugly emotions and beautifulness and grow. this is a journey I wouldn’t ever have volunteered for, nor would I let anyone I love volunteer for it either…but I feel a little peace knowing that it’s not all ugly, there is beauty when I look deep into it all, and I’m humbled that God felt strong enough in my faith to walk this journey in front of thousands of others to someway help his kingdom. </font></p> <p><font color="#62d1e6" size="5" face="Bradley Hand ITC">so here we are, nearly two years after losing our sweet son to Cystic Fibrosis, my heart is still as fickle as the weather…partly sunny with rainclouds in the midst…even thunderstorms…I’ve learned to embrace the ups and downs…but honestly thought that by now it’d be more predictable or easier. The lesson in that is when I read or hear of others grief journey’s years ahead of ours…I’ll never assume their figuring it all out, or have it all down. june 24,2010 I stepped onto the worlds longest roller coaster ride and I will never get off until I am called home for good, and I need to really embrace the ups and downs and curves and that sometimes it all comes faster than others…bleh…I used to love roller coasters…</font></p> <p><font color="#62d1e6" size="5" face="Bradley Hand ITC">blessings and LOVE</font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com3tag:blogger.com,1999:blog-3753922795485552054.post-50142545399761053052012-04-18T22:27:00.001-07:002012-04-18T22:27:38.279-07:00Conner’s 9th Birthday<p><a href="http://lh6.ggpht.com/-WYYo96tgeZE/T4-iJGUqDHI/AAAAAAAABMI/MBwgEc5kenc/s1600-h/013%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="013" border="0" alt="013" src="http://lh3.ggpht.com/-EwH5dwa-ZNU/T4-iJjSZzZI/AAAAAAAABMQ/Px0_XlTrqTs/013_thumb%25255B1%25255D.jpg?imgmax=800" width="296" height="442" /></a></p> <p> </p> <p>Spent the morning at Opening Baseball ceremonies for Hunterboy…</p> <p> </p> <p><a href="http://lh4.ggpht.com/-63fh-SlwJJg/T4-iJwxBQzI/AAAAAAAABMY/OkMob9eicsY/s1600-h/011%25255B6%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="011" border="0" alt="011" src="http://lh6.ggpht.com/-8Nz9NyOVQyo/T4-iKtIUk-I/AAAAAAAABMg/oyaTQ2kk88Y/011_thumb%25255B3%25255D.jpg?imgmax=800" width="281" height="420" /></a></p> <p> </p> <p>Spent time at home together, the 4 of us…then up to the cemetary we went.</p> <p> </p> <p><a href="http://lh3.ggpht.com/-Zy75lCg_H94/T4-iK79o2WI/AAAAAAAABMo/WphyPh5cJQU/s1600-h/015%25255B6%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="015" border="0" alt="015" src="http://lh6.ggpht.com/-5r5VRE5vkno/T4-iLc6R0zI/AAAAAAAABMw/C7hoboQEXKk/015_thumb%25255B3%25255D.jpg?imgmax=800" width="293" height="436" /></a></p> <p> </p> <p>Conner’s grave…22 red balloons to send Hunters big idea to heaven…</p> <p> </p> <p><a href="http://lh5.ggpht.com/-CufrWM_1nys/T4-iLlSnzjI/AAAAAAAABM4/S2933CQUHcc/s1600-h/017%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="017" border="0" alt="017" src="http://lh3.ggpht.com/-PMxzFCq8FIg/T4-iLy5wqoI/AAAAAAAABNA/trwyDAXBri8/017_thumb%25255B2%25255D.jpg?imgmax=800" width="286" height="427" /></a></p> <p> </p> <p>Little bags filled with little bites of Angel Food cake, each bag labeled to a family member we love in heaven, that way each get to celebrate with Conner. Oh what a great idea hunter!</p> <p> </p> <p><a href="http://lh3.ggpht.com/-s5vQE_CvAtY/T4-iMfIOhVI/AAAAAAAABNI/sNQp5BJutWU/s1600-h/020%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="020" border="0" alt="020" src="http://lh3.ggpht.com/-niFz0b3v2e4/T4-iMgYRazI/AAAAAAAABNQ/3Rdmc_yau4o/020_thumb%25255B1%25255D.jpg?imgmax=800" width="285" height="425" /></a></p> <p> </p> <p>with mommy…</p> <p> </p> <p><a href="http://lh6.ggpht.com/-0_UkPdjgiW0/T4-iNNzO54I/AAAAAAAABNY/WgfmacRmG-A/s1600-h/025%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="025" border="0" alt="025" src="http://lh3.ggpht.com/-NrX9SKBRILU/T4-iNSx2JFI/AAAAAAAABNg/-1Y3b-gm9Ig/025_thumb%25255B1%25255D.jpg?imgmax=800" width="271" height="404" /></a></p> <p> </p> <p>With Daddy…</p> <p> </p> <p><a href="http://lh5.ggpht.com/--xRkqeISzzk/T4-iOa5s4xI/AAAAAAAABNo/RWRJmCZhmjQ/s1600-h/031%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="031" border="0" alt="031" src="http://lh4.ggpht.com/-AjCC2x9Qt1I/T4-iQ-uF5mI/AAAAAAAABNw/M5aukMjE7GA/031_thumb%25255B2%25255D.jpg?imgmax=800" width="276" height="411" /></a></p> <p> </p> <p>Off to heaven they flew!</p> <p> </p> <p><a href="http://lh5.ggpht.com/-oOxleqfzapo/T4-iRBNNXfI/AAAAAAAABN4/aIuce513tfQ/s1600-h/034%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="034" border="0" alt="034" src="http://lh5.ggpht.com/-NiBx0fgOrf4/T4-iRV38-2I/AAAAAAAABOA/OBTVHbMEFRU/034_thumb%25255B1%25255D.jpg?imgmax=800" width="265" height="396" /></a></p> <p> </p> <p>Straight to the one we love, cherish, miss and think about every moment of everyday…our sweet son and brother…</p> <p><font color="#ff0000" size="7" face="Love Letters">Conner</font></p> <p><font color="#ff0000" size="7" face="Love Letters"></font></p> <p><a href="http://lh3.ggpht.com/-ciB1ON2DZww/T4-iR7QQB1I/AAAAAAAABOI/Dv6fdpcp2j0/s1600-h/Super%252520Soaker%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="Super Soaker" border="0" alt="Super Soaker" src="http://lh4.ggpht.com/-WFTRtHovkD0/T4-iSdVrw_I/AAAAAAAABOQ/LAhsrFi_0Sg/Super%252520Soaker_thumb%25255B1%25255D.jpg?imgmax=800" width="408" height="273" /></a></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com3tag:blogger.com,1999:blog-3753922795485552054.post-66149778102598881662012-03-27T22:14:00.001-07:002012-03-27T22:14:19.263-07:00breath by breath…<p><a href="http://lh3.ggpht.com/-bccAWGWn338/T3KeE4MFJ8I/AAAAAAAABLI/UiLCMv1ej_U/s1600-h/013a%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="013a" border="0" alt="013a" src="http://lh5.ggpht.com/-bc-5u8bOhCo/T3KeFtPQRQI/AAAAAAAABLQ/hnrvcg5Rpa4/013a_thumb%25255B1%25255D.jpg?imgmax=800" width="528" height="360" /></a></p> <p> </p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">Well there she is! 25 weeks along with baby #4…and if you didn’t know already, she’s a…well “she!” I think after two ultrasounds both of which there was no male parts flashing us, which quite frankly we’re used to seeing living in a home of all boys and me, and even zooming in on the area in question and both tech’s telling me that it is a girl…I think I finally fully believe it. after the first ultrasound I believed it, and it really just made sense with all that had been going on and all that had been whispered to me in silence, that it would be a girl…but still I’m a mom to boys. I bleed blue, I love dirty, sweaty, stinky adorably rotten boys…so part of me still thought, well the tech could’ve been wrong. I kept thinking, watch I’m gonna think it’s a girl and I’m gonna deliver this beautiful bundle and they’ll say “it’s a boy!” </font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">guess I finally believe it all the way now.</font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">it was fun to see her again last week, she was much more cooperative this ultrasound, gave us some adorable face shots, but this one is my favorite, it almost looks as if she’s smiling…like saying hello…and who couldn’t’ love those chubby cheeks?!</font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">This ultrasound was done not just to take the normal measurements as we did in February at the 18 week one, but to start watching for “soft signs” for CF…like build up in GI or any “bright areas” my OB says. I’m not very knowledgeable in this area, because as with my pregnancy with Bradyn, I refused extra testing for CF. I know my risks, and lord knows I know all about CF already, so for me it was just an ultrasound to see the baby again, although my Dr wanted this ultrasound maybe to feel better herself…who knows. I won’t refuse a chance to see her so I agreed, and if my OB decides she’d like another one a little closer to delivery to check stuff again, that’s fine. I just know that nothing they could ever find on an ultrasound would lead me any other direction than having this baby. </font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">Not much else new to report as far as baby goes, I’m almost to the third trimester already, it’s all just blown by so quickly it seems, but I know all too soon it’ll start to drag on forever and ever as I grow more and more uncomfortable and more and more impatient to meet the baby, so I’m trying to just relax and enjoy it. Hunters beyond thrilled, he even calls the baby Hannah, which I find funny because we haven’t picked out or really even started talking much about names yet. he says theres a girl in his class or at his school with the name Hannah and he thinks it’s cute, so he started saying “I can’t wait til my sister Hannah is here!” so funny…not much of a Hannah girl myself…but it’s cute none-the-less.</font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">And here it is now almost April…moving into the season that I dread. it holds such heartache for me, as I’m sure for Brad and the boys too. That’s when it all flashes back…the memories of planning Conner’s last birthday in April, getting a playground for our backyard so conner could try to enjoy the time outdoors with his oxygen since the park was no longer an option, the phone conversations with the doctors in the CF clinic and the social worker, asking me all sorts of questions…meetings with hospice…its all so real when spring comes. he should be here. there should be three little brothers running and laughing in the backyard when the suns out, or yelling and fighting together about legos when they’re stuck inside from rain. there should be current pictures of Conner in our home, not ones from two years ago. I should be planning an actual birthday party, and not brainstorming with Hunter how to celebrate a birthday in heaven. (although he has the BEST idea for this year!!!) and it’s nearly impossible to celebrate my birthday just three days before his because my heart is so heavy. it’s like each and everyday from april thru the 4th of july holds a special memory, not a good one…one of pain and I have to face it each day and feel the pain. there’s no way around it. if I try to shove the feelings aside it makes it worse. learned that the hard way so I don’t do that anymore! but it’s strange how it’s nearly been two years and each one of these spring days I can remember vividly the day, the smell, everything. how he was feeling, who was with us, all of it. It hurts to think of it all, how real it all becomes this time of the year…how much has changed, and will never be the same again, no matter how much time passes. I miss his face. I miss his beautifully squishy tummy, I miss his gentleness, his compassion, and his bravery. I miss when he’d yell at me for telling him to go to bed, or getting him out of the tub while he was still playing (we’d laugh when I’d say you’ll get wrinkly like a prune….because of course he was already wrinkly!) I miss laying next to him and hearing the sound of his breath and heartbeat, his little fast asleep whimpers. these are things I’ll never get back. and the little things are what I miss the most. doing his laundry, cleaning all his nebs out, making his meals, praying for him…being his mother. I miss it terribly.</font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">I’m sad that his sister wont know him like we know him, or get to really love him like we love him. oneday she will get to meet him and I know will fall in love as we did and she will cherish him like we do, but I know that while on earth, even the best stories we could tell of his kindness and love could never hold a candle to the real him that she will get to meet oneday in heaven. I know just as he does with us he will be the best big brother and protect her from great distances and he’ll walk with her very closely, and I don’t doubt that she’ll be able to feel his love and presence just as we can…and for now that’ll have to do. words could never describe Conner in a way to do him justice, not that he was perfect, because he wasn’t, not because he was the kindest person to ever walk the earth, because he wasn’t, but simply because he was Conner. and the very best “he”, that he could be. perfectly him.</font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">who knows where this next spring will take me as far as healing, joy, pain or all of the above simultaneously, I’ve just learned to be kind to myself and take it one day at a time…even just one hour at a time. and to cry when I need to cry. and to smile when I feel like smiling. and with this blessing of a baby waiting to see the world thru our eyes…all I can do is pray that I continue to let god do his work in my life so that I can be the best mom that I can be to all 4 of my kids, and the best wife to my husband of eleven years, and to let god do the rest. I know I can’t do it all, honestly I can’t even do half of what I need to do in a day without Gods help…</font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">and as we head into our Spring break and prepare to take our kiddos to the zoo just as we did with Conner two years ago…I better take it just one breath at a time…</font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky">blessings and LOVE…</font></p> <p><a href="http://lh4.ggpht.com/-AM4TH6JQQtc/T3KeGEctwVI/AAAAAAAABLY/eFeJMpBcl50/s1600-h/2010-04-01%252520002%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="2010-04-01 002" border="0" alt="2010-04-01 002" src="http://lh6.ggpht.com/-7NGJFdUCtCU/T3KeGhoVg1I/AAAAAAAABLg/4w5aiZaCs9g/2010-04-01%252520002_thumb%25255B1%25255D.jpg?imgmax=800" width="446" height="336" /></a></p> <p><a href="http://lh3.ggpht.com/-mrfCVJ-OvKk/T3KeIGRMmfI/AAAAAAAABLo/DnZZ_HiJCh4/s1600-h/2010-04-01%252520017%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="2010-04-01 017" border="0" alt="2010-04-01 017" src="http://lh4.ggpht.com/-FUMzJ4wQZY8/T3KeIv8PA0I/AAAAAAAABLw/9L2m2J1J04c/2010-04-01%252520017_thumb%25255B1%25255D.jpg?imgmax=800" width="443" height="333" /></a></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"><a href="http://lh5.ggpht.com/-1UL9iTXOHts/T3KeJchdEeI/AAAAAAAABL4/JBFMhukmfA8/s1600-h/2010-04-01%252520036%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="2010-04-01 036" border="0" alt="2010-04-01 036" src="http://lh5.ggpht.com/-tA4qZVKWtKQ/T3KeKEhyn6I/AAAAAAAABMA/BfPdIf7KNf0/2010-04-01%252520036_thumb%25255B1%25255D.jpg?imgmax=800" width="448" height="337" /></a></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"></font></p> <p><font color="#ff80c0" size="4" face="Pea Crisby Funky"> </font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com2tag:blogger.com,1999:blog-3753922795485552054.post-55744075235587673462012-02-23T22:01:00.001-08:002012-02-23T22:01:45.045-08:00The color of panic AND love<p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I was about 11 or so weeks into my pregnancy when it happened. </font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I woke up one morning in December, it was probably 3am and I felt off. As I began to wake up more and more, I realized that I was wet. In my half awakeness, I stumbled to the bathroom for the usual potty break, but to my horror all I saw was blood.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">lots and lots of blood.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I had to change even my pajama pants, I was drenched. </font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I was freaking out.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I got back to bed and realized the sheets were soaked as well, this I knew was not good. it wasn’t just spotting.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I instantly started to let my mind roll to wherever it wanted to go, which wasn’t a good idea, because all it wanted to do was send me into a frenzy. after an hour, I calmed myself enough to pray. and thank God I learned to just listen…all I got out was “I don’t even know where to begin…” and just as swiftly and calm as ever I heard “let me do my miracle…”</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">wow. ok.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I began to calm a bit more, and I realized I wasn’t cramping, I wasn’t in any pain, so maybe…for whatever reason…I should just relax and trust.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I got up the next morning, told Brad what happened the night before ( I didn’t get much more sleep, I tried…)and I called the dr as soon as the clinic opened. they had me go in for an ultrasound. </font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I was still bleeding heavily.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">the baby looked great, strong heartbeat, no sign of any miscarriage.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">the dr called about 20 minutes afterwards and said that they saw a tear in me probably when the pregnancy “attached” inside my uterus. I was to be in bed until the bleeding slowed and turned to spotting. and to really just take it easy. </font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">two days later, after laying in bed I felt good to get out a bit. it was the week before Christmas and I had a few last gifts for the boys to get, I still wasn’t cramping and the blood had turned to spotting.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I was out of my house for I’d say 2.5 hours….</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">then I felt it again.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">it’s just a horrible feeling really. </font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">blood when you know you shouldn’t be bleeding…</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I rushed home and went back to my bed. but it got heavier. and heavier. big clots…bright red. I got up awhile later to go to the bathroom and I was horrified…it was just blood. I started to panic again…I kept thinking…”why is this happening…why are we to go thru this…what would it do to us to lose another child…” and God just replied to trust Him to do His miracle.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">We wound up in the ER that night because the blood was so heavy…they did another ultrasound and the baby continued to look great and strong…so I went home and stayed in bed until just before christmas.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I went to see my dr every week thru mid january, and the bleeding eventually turned to spotting, and then in late january, completely went away.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I had my midway ultrasound on February 6th and when I saw the dr the next day she said theres still a large clot that will either pass while I’m still pregnant, or during/after delivery. but that the placenta is fully attached and my pregnancy was once again considered healthy and on track!</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">words to soothe my fragile soul…</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">this is the main reason we didn’t tell sooner of the pregnancy, I wasn’t sure how it was going to turn out. </font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">and for now I feel great…tired, and a bit achy…but it’s par for the course…AND…it truly is a blessing not a complaint. after all isn’t life the most precious thing in the world?</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I’m not fully sure of the lesson we were to learn from that beyond trusting…and maybe it was for someone elses journey, who only knows…but I’m so thankful that I learned to listen…I chose to believe…and let God do his miracle…</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">he is soooooo good to us.</font></p> <p><font color="#dd9ce2" size="4" face="Bradley Hand ITC">Blessings and Love</font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com5tag:blogger.com,1999:blog-3753922795485552054.post-21165935518948774082012-02-13T21:07:00.001-08:002012-02-13T21:07:53.566-08:00Our sweetest Valentine…<p><font color="#ff80c0" size="4" face="Bradley Hand ITC">I was sick much of last week, so I haven’t updated yet…sorry so slow. I can’t wait to share this part of the story…</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC"></font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">So starting back when I was pregnant with Bradyn in 2008, I love to exercise, and I remember exactly where I was when I heard one of those God whispers. I was walking the lake by my home, I had recently found out our 3rd bundle of blue was on his way, I was rounding the corner on my walk over by the hospital and I was overcome with these words “you will have a daughter.” 5 simple words. and boy was I confused! we had just found out that we were expecting a son, and I never really saw myself having more children…but never-the-less I let it sit in my heart all these years. after delivering Bradyn I never had this overwhelming feeling like we were done raising our family. so we decided not to permanently prevent that from happening, but in the meantime make sure it wouldn’t happen unknowingly. (how's that for wording what could be TMI!)</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">fast forward to 2010, after losing Conner I can honestly tell you that my heart felt done. there would be occasions where someone would ask if we were having anymore children and I would tell them no…and I meant it. for the first time in my life I felt as though I truly was done.  I didn’t want to do anything that would take away more from my two living boys then what life had already dealt to them. I wanted them to have 100% of me. I felt like I needed to make up for the weeks and weeks away at the hospital, and always gone at clinic with Conner, or always trapped on the phone with insurance or treatments, etc. I felt they deserved all of me. so there was no more thought of children.</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">I honestly can’t really explain what happened that changed that. </font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">but something did. </font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">back in august we started having discussions about having our last child and what it would mean for our family, how it would effect the dynamic of our family, if it made sense for us, or if we should let it go. we discussed the CF aspect of it knowing that 1 in 4 chance with each pregnancy was still very much applicable to us. all I can really say to that is I felt a peace with it. I honestly felt, and still do feel that CF isn’t a reason to do, or not to do something. cf can steal your entire life if you let it, it will cause you great fear and worry, it will take every opportunity to rob you of joy if you give it an inch to do so…and after it left our home a year and a half ago, I knew in my heart that never again would it have any control over my life, our life. our families life. the only way it would have power is if we gave ours to CF. and it took enough. it hurt us plenty. it took our son, and it briefly stole our joy and our smiles. </font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">but that changed.</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">we took the power back and refuse to give even a fraction of it back.</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">that’s absolutely just our opinion, as each is entitled to their own, and each decision for each family is the best and the right one for that family. no two families or situations the same…just as no two people with CF are the same…so in the rare chance this sweetie does have CF (which again I truly feel she doesn’t) then we’ll take it all one day at a time just as we did with Conner…but with even more hope in her future thanks to continued research and advancements towards a cure.</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">so we decided to start trying for our final addition in September, and just before Halloween while Brad was away at a Seahawks game, I got not just one, but 4 very positive tests showing pregnancy (yes I couldn’t’ believe it so I had to test like a bazillion times…)</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">it happened so quickly we were shocked. speechless actually. told just a handful of people and really just kept living life normally but with a secret…</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">this baby was not our decision to have. whatever purpose this little one has for this lifetime, and in our family is from God…he was just waiting for us to trust in his plan. and MAN that was fast! </font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC"></font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">this journey hasn’t been all smooth sailing, we’ve hit some bumps and had some scares so far, and we’re only halfway done. But we have complete trust in Gods plan, and know that His intentions aren’t to harm us or hurt us…yet we also know that sometimes the plan isn’t always free from worry or pain. if we’ve learned anything the past year and a half it’s that pain always has purpose…you just have to hold on long enough to find it out.</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">we are truly beyond ecstatic to be adding this final addition to our home and look forward to having some new joy in our lives, and yes even in the midnight hours awake with a wee newborn…all of it this time around will be cherished…what a gift. Hunter and Bradyn are beyond excited, infact we had to hold off telling Hunter until Christmas day because we knew he was going to be so excited he’d tell everyone he saw. And he does. He’s the best big brother we could have ever hoped for. so kind and compassionate, and more and more sensitive just like his older brother, Conner was. One of his best features. And Bradyn…well he’s 3…so he’s not so sure yet. Moms belly is a little bigger, but other than that everything else is the same. No crib has been set up yet, No pink walls adorn any bedrooms (and nor will there be any pink walls just sayin) so when a person asks what's in moms belly before the ultrasound last week he would’ve told you “food”  and then after he went to the ultrasound with Brad and I he will now tell you that there are little feet in my belly! So sweet. He loves on babies though…he’ll make the connection when he slows down enough to let it sink in…but we know he’ll be just as thrilled and will be a terrific protective older brother. </font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">that will be all for tonight…momma’s getting sleepy (as always), so I’ll post again soon…</font></p> <p><font color="#ff80c0" size="4" face="Pea Anna-Banana">LOVE LOVE LOVE</font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC">and a little Hope too! </font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC"><a href="http://lh5.ggpht.com/-0voLkzAWyOE/TznsJm-he9I/AAAAAAAABK4/53merMT68Mk/s1600-h/050a%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="050a" border="0" alt="050a" src="http://lh3.ggpht.com/-jcon3jzpmvY/TznsJ-SOKCI/AAAAAAAABLA/MlxeEvIt6vQ/050a_thumb%25255B2%25255D.jpg?imgmax=800" width="453" height="303" /></a></font></p> <p><font color="#ff80c0" size="4" face="Bradley Hand ITC"> </font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com2tag:blogger.com,1999:blog-3753922795485552054.post-58524724551614263742012-02-06T23:50:00.001-08:002012-02-06T23:50:05.393-08:00Part 1…<p><font color="#dd9ce2" size="4" face="Bradley Hand ITC"><strong>Long before losing Conner, I would hear from God in the stillness of my heart. I’d be out on a walk, or in my car quiet, or even just before falling asleep, I’d get little words of comfort, or reminders whispered to me, and I always felt they were from God, but part of me always wondered if I had made it all up.</strong></font></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">imagined it.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">my relationship with Him wasn’t what it is today, it’s been a journey of learning how to trust, be silent, believe even when it doesn’t make any sense, and having faith that He truly has my best interests and desires in mind all the while. Life throws curve balls. that’s the price of living in a broken world. there’s lots thrown in our faces each day to believe in, people to trust, new products to have faith in, and it’s very easy to get trapped in a circle of un-decidedness, or even half hearted trusting. </font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">see, when I would think I would hear God whisper to me, it wasn’t always what I wanted to hear, or even sometimes it wasn’t something believable to me, so I’d tell myself that I simply made that up. how could the God of the universe communicate to me…by truly, hearing voices in my head. it just sounded crazy.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">but after losing Conner I made a very conscious effort to listen closer. to trust more. to have an even blinder faith. to never doubt that stirring in my soul that I knew could truly only come from one place.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I wasn’t hearing voices…I was experiencing God.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">how amazing to finally make peace with that and understand it.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I remember that feeling of becoming a family of 5 minus a beautiful 1…and that held my heart tightly for quite sometime. After all, we knew Conner was part of our family…but many others never would, so it just made sense. visibly we’d be a family of 4 to many, but always a family of 5 to us. my heart broke as it accepted that fact. </font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I remember god speaking to me one day, he begun reminding me that numbers are just details, that what others who don’t know our circumstance, may count us as family of 4, but it really didn’t matter. he showed me how none of it even mattered eternally, and many families are living without a child or spouse, or parent in their families and in the end…the number doesn’t matter. the heart does. the heart of the family is all that matters.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">I knew that Conner would never, nor could ever, be replaced in our lives, and each day I realized how getting caught in the trap of “details” really was causing us to live a life I don’t feel would respect Conner’s legacy, his love. just as I stopped letting Thursdays get to me, I had to let go of family number details. little, by very little I am able to release a “detail” from it’s grip against us. who cares if it’s a Thursday….the 24th day of each month carries no weight any longer, family of 5 minus 1 isn’t our family definition, and little by little we’re able to break away from the chains that hold us so tightly in grief. </font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">and somewhere in all of this…we’re learning how to live again.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">fully live again.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">dream.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">grow.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">and break away from the “details” and realize that it doesn’t honor Conner to live a life of bondage to details. his life wasn’t details, it held significance that will never be forgotten, the impact will be felt forever in our hearts. </font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">what a journey this past 5 months has been in growing, in listening, and in dreaming. and by listening to God in the stillness of each possible moment our family found a new hope, and a new joy far beyond what we could have ever imagined, or even desired after Conner’s death.</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">We’ve been waiting nearly 5 months to share with you all that has been going on in our lives beyond the grief…but there’s just too much to share all at once…and I owe it to God to give him all the glory, one story at a time…so as much as I’m DYEING to tell it all now…I will leave you with just a few pictures…to get the REAL story of learning to listen to God started…I will post soon on how this new joy unfolded, the miracles that have already taken place with it and how Conner’s hand is in it all!</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC"></font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC"></font></strong></p> <p><a href="http://lh4.ggpht.com/-4jhjEKocpa0/TzDXqWoO2qI/AAAAAAAABKY/la9A3ILLocc/s1600-h/031%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="031" border="0" alt="031" src="http://lh5.ggpht.com/-LHVywV9vzeQ/TzDXqpP61BI/AAAAAAAABKg/Irkv_TYOS-0/031_thumb%25255B1%25255D.jpg?imgmax=800" width="289" height="431" /></a></p> <p><font color="#ff0000" size="6" face="Bradley Hand ITC"><strong>WE’RE EXPECTING!!!!!</strong></font></p> <p> </p> <p> </p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">Can’t wait to start sharing the stories from the beginning, it’s been so hard to remain quiet, but all good things must come in their perfect time, and God has been in the drivers seat from day one…and good thing too because it’s been a very bumpy ride thus far…</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC"></font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">One story I can’t wait to share though…</font></strong></p> <p><a href="http://lh5.ggpht.com/-riiD16vDZzM/TzDXq_rtp5I/AAAAAAAABKo/qN3pTKRZsQk/s1600-h/027a%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="027a" border="0" alt="027a" src="http://lh3.ggpht.com/-1KrWskXkaSg/TzDXrLS2HsI/AAAAAAAABKw/MpxoeHr0g-4/027a_thumb%25255B1%25255D.jpg?imgmax=800" width="290" height="433" /></a></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC">How we KNEW that Pink is our new blue…God is So good…</font></strong></p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC"></font></strong></p> <p> </p> <p><strong><font color="#dd9ce2" size="4" face="Bradley Hand ITC"> </font></strong></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com12tag:blogger.com,1999:blog-3753922795485552054.post-56586380319958578692012-01-31T22:08:00.001-08:002012-01-31T22:08:00.344-08:00The ugly isn’t who I am but it’s real<p><font color="#ff0080" size="4" face="Bradley Hand ITC">I feel like it should all be out in the open by now. it’s been a year and a half….(how did THAT happen?) I’m growing more and more tired of all the interruptions, surprises and constant emotional drain.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’m ready for that magic switch to be flipped.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">forever…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I don’t even truly know what that would mean or look like…but I just feel like by now in my journey it should be some what familiar…somewhat predictable. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">why isn’t it predictable?</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">today I’m just over it. all of it.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I started my taxes…I had to officially delete Conner from our families financial reports…he is no longer a family member of ours in the eyes of the government. seriously, last year was hard to file taxes putting that he died on it. but this year, I had to physically check the box that he died and I had to delete him.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I had to.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">that lovely computer program didn’t do it for me. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">and that was the first thing I had to do. so talk about having a fun 4 hours working on taxes after that introduction. and I’m not even finished yet. much more to do.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">stupid program keeps saying things like “congrats you get a $2000 tax credit for your two children….”  HELLO I have three…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">but I guess one doesn’t count anymore…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">but to me…he counts.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">he matters.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">do you know that I honestly don’t remember what I felt like to be his mother. I don’t remember how it felt to hug him or kiss him, or comfort him, or protect him. I often find myself looking at pictures of him or our family and I just don’t remember him being here. it’s like it’s a dream. like it never really happened.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">am I the only one who feels this way?</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I feel like he’s been gone longer than he was here, and that is so very far from the truth, I know it…but I don’t feel it. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">once again my heart and head won’t connect.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">they don’t agree.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">so I get confused, I feel like I’m a shell of who I used to be. it’s strange.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">amidst cleaning out my tax drawer (which this year I WILL be better at organizing so it’s easier!) I found a few cd’s that had pictures of his last bday party and his last day on earth on them.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">those were so difficult to look at.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">his birthday, as I looked at each picture I was overwhelmed with the exact emotions I felt that day. I smelled the smells, I remembered the voices, the laughter, the bittersweetness of it all. I remember it all down to the smallest detail. our grass was mowed, I remember there being a smell of fresh cut grass mixed with the smell of the new cedar chips we had put down under the new play equipment. I remember setting up all the hawaiian décor. I remember seeing him struggle so much to breathe, but he had the most beautiful smile on his face you could imagine…his heart was full of love and his eyes were full of wonder.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">it was perfect…</font></p> <p><a href="http://lh6.ggpht.com/-hrkWcgNrjP8/TyjWuKGxrGI/AAAAAAAABJg/VVg_A4KuIl4/s1600-h/Super%252520Soaker%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="Super Soaker" border="0" alt="Super Soaker" src="http://lh3.ggpht.com/-qgHG6FEtfWA/TyjWuceZBoI/AAAAAAAABJo/JNYIJwd0A54/Super%252520Soaker_thumb%25255B2%25255D.jpg?imgmax=800" width="439" height="294" /></a></p> <p> </p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">when I see pictures, strange as it may sound but they are my proof that I’m not just imagining him. maybe others who have lost a child understand that…maybe not. but after awhile nobody says his name anymore. no one asks about him any longer. nobody even realizes the burden of pain you carry with you each and everyday. and after awhile…as his mom, I get used to people forgetting. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">and seeing picture is proof for me. it helps me to just remember those moments that get lost in the business of living…raising two other beautiful boys, being a wife, and tending to normal everyday needs. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">he was here.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">we had a connection that can’t be explained. it went above and beyond a normal parent/child relationship. I think that’s true for any child with chronic disease. I didn’t just care for his everyday needs…it went deeper than that. I never gave up…not even the day he died…I remember knowing it was near, but still not believing it was that day…I was still fighting, I wasn’t anywhere near finished.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">but he was…bless his tired heart…he was finished. and he waited…the craziness of that day, the chaos of all the people stopping in and out, pastors praying, friends of ours and even friends of his coming to say goodbye…it flew by…yet time stood still. that was the longest day of my life. and he held on…until we let him go. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I wish so much that more bereaved parents would speak up about what its' like. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I feel so alone most times…somedays I feel absolutely crazy…like there’s absolutely NO WAY any other parent still feels such raw pain. shouldn’t it be a bit easier now that it’s 2012???? </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">it’s like an underground society where it’s all kept hush hush. in the beginning stages of grief people express themselves openly, they are raw and vulnerable…but once the world moves on…why do we get quiet?</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I feel like if I don’t say Conner’s name, nobody will. if I never bring him up, nobody else will. and if nobody will talk about him…then it’s just another reminder that not only is he gone…but that he’s not coming back…EVER…and nobody truly, really cares like we do. (I don’t expect anyone else to…) I guess what I’m saying is, it contributes to that crazy feeling that he was just a dream.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">and living without him has been just a nightmare…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC"></font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">many days I want to write. I will open up my journaling program…maybe jot a sentence or two…but I stop. like tonight. today was so overly emotional, with the tax issues and all, really it was way more than that…but that was my breaking point.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I opened up my program and I just stared.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I don’t write for sympathy. nor empathy. especially not for pity. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I don’t write for people to read my words, or feel my feelings, or hear my heart in it’s rawest form…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I don’t write to tell a story, I don’t write to waste time.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I write for sanity.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">for me.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I have to get it out sometimes. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">writing is soothing to my soul…it helps me to cry when I’m long overdue…it helps me to put life back in perspective again…to regain balance. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I write for me.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">so there are many days where I just need to spill my heart out onto the keys…but I fear what many may think. here’s why…because honestly I don’t care what people think of me…but what I do care about is others reading my blog on a particularly bad day I may be having…and a person believing that I’m giving up, or who may be in a similar situation…and maybe it pushes them over the edge…does that make sense?</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">not every day is bad. not everyday is bright and shiny…I need to write on THOSE days…not the happy days. those days are the easiest ones to get thru…with or without child loss, you can agree…when life is going well, what is there to vent about??? but a build up of enough bad days, or string of events…or days of being so emotional and exhausted from crying your eyes out at night, or tossing and turning, or dreaming of him…or helping your 6 year old understand why his life is so different now than it was just a year and a half ago…enough of those days…I have to get it out. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">and I’ll admit…because I know…it’s not pretty. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’ve never once felt so sad or so desperate or so broken where I felt like giving up. not even one moment. but when I have bad days, some ugly stuff that’s been building up comes out, and I never want people to see that and believe that lie. writing for myself is still an extremely large responsibility. because I do know how many people read this blog, whether sporatically, or even for the first time. and I take that seriously. if one doesn’t know me, authentically KNOW me…they may see only the darkness, when there really is so much LIGHT in my life…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">but those aren’t the days I need to write…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC"></font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">so here’s some of those ugly truths…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’m so tired of crying</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’m so tired of feeling incomplete, inadequate</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I wish that my heart could regenerate that chunk that’s forever gone…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’m trying so very hard to stay involved in the CF fight…but each day it’s getting more difficult to…I pray Conner’s not upset…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I hate not hearing his name anymore…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">yet somedays I hate hearing it because it hurts so much that he’s not here</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’m sick of some of the lessons on living that I’ve been thrown into learning…I know, I know…I wouldn’t have signed up to find out any other way, but I’m still so tired of all the change</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I hate this season…seeing everyone gear up for their CF walk…and all I can recall is the last one that meant ANYTHING…</font></p> <p><a href="http://lh5.ggpht.com/-6pINY91iTQw/TyjWujiSexI/AAAAAAAABJw/kMLvEj4IQt8/s1600-h/IMG_2345%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="IMG_2345" border="0" alt="IMG_2345" src="http://lh6.ggpht.com/-tB6HXpoSmjc/TyjWvJ1VLGI/AAAAAAAABJ4/XAMAhpBtaCM/IMG_2345_thumb%25255B2%25255D.jpg?imgmax=800" width="561" height="211" /></a></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">and just wishing to remember that passion again…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’m tired of wondering where a few people I love greatly have disappeared to…but knowing that my heart doesn’t have the strength to find out. I just can’t take anymore loss…how sad is that?!</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I hate having hard days with my husband because he and I are both missing Conner and handle it so different…yet I hate to have those days full of smiles and laughter because I feel Conner should be with us enjoying it.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I still hate how people say what they feel are helpful comments…but really…it hurts. because truth is…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’m human, I’m selfish. that’s how god created us…imperfect.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’m a mom without her son. I don’ t care if he is celebrating life in heaven…I’m human and I’d rather have him HERE…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I don’t want him in pain anymore…but honestly…I don’t want him breathing free because that means without me… (yes for now…but now is soooo long!)</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I’m trying really hard to be happy about the new CF drug that was fda approved today. and I know that my heart is so happy about it. but on a surface level…what it really does to me is remind me of those many days I spent sitting on my stairs (yes I remember it down to the finest detail) calling a cf dr in denver, calling the CF foundation for other drs’ information…anyone who could possibly have access to those drugs back when he was alive….and I remember being told no, over and over again. and now…now it’s released. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">uuuhhhggg…see how ugly I feel sometimes? it’s scary to feel these feelings….to write them out is even scarier. sometimes I just start typing and when I read what I’ve written I’m shocked at how I really feel…my mind protects myself most days…coping mechanism…because these feelings, while obviously they hold some truth in my life or I wouldn’t feel them…they are not who I AM…they don’t tell of my love and my joy and my hopes and my trust in God. feelings are deceptive. but my heart, my soul, is simply trying to make sense of all that has occurred. </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">and it’s trying to find a way thru it all…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">at the deepest level of it all I’m really just a scared, broken hearted woman…who held her sweet sons hands as he exhaled the last breath from his lungs. who endured more pain and more unbelievable situations after that day…and I’m just looking for peace.</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I find it when I expel the ugliness from my heart when it’s necessary…because when I let the ugliness go…it gives my heart more room to grow in LOVE and in truth. and when I hold it in for too long then as you probably can tell it gets kinda ugly <img style="border-bottom-style: none; border-left-style: none; border-top-style: none; border-right-style: none" class="wlEmoticon wlEmoticon-smile" alt="Smile" src="http://lh6.ggpht.com/-RyRWgos3ZEE/TyjWvclUNwI/AAAAAAAABJ8/1A8y77Z86uw/wlEmoticon-smile%25255B2%25255D.png?imgmax=800" /> </font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC"></font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">I pray my next rant is about something happy…because most days I’m happy, joyful…and content…those days I enjoy from sun up to sundown so there’s no time to write anything…but I will make a conscious effort to do so and soon…while I write to get life off my chest, I do also need to show other bereaved parents that it’s not all dark and twisted…that yes there are many bad days…and that will never go away…but with some hope and trust (and some amazing friends!) even the darkest day a little light can shine on thru…</font></p> <p><a href="http://lh4.ggpht.com/-a90RnoQJvgY/TyjWvoKpH-I/AAAAAAAABKE/MQEJqkmVDTI/s1600-h/008%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="008" border="0" alt="008" src="http://lh6.ggpht.com/-Q7MHhZW-vX8/TyjWvz6iQqI/AAAAAAAABKM/n3ZYc8yRm2A/008_thumb%25255B1%25255D.jpg?imgmax=800" width="381" height="287" /></a></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC"></font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">because afterall…once we’ve known a love so pure and delicate…it never goes away, even in death…we carry it forever in our hearts…</font></p> <p><font color="#ff0080" size="4" face="Bradley Hand ITC">mommy misses you bubby…we all do…hold us close this next little while, get us thru this valley…</font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com6tag:blogger.com,1999:blog-3753922795485552054.post-70599662867351285442011-12-30T23:00:00.001-08:002011-12-30T23:00:22.949-08:00A new Year…a new HOPE…<p><font color="#ff80c0" size="3" face="CoolDots">Well we’ve made it!</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">Thru our first calendar year without him here with us in person. I feel both a sense of accomplishment and a sense of overwhelming sadness. Weird combination. Last year we only had to make it barely 6 months without him to get that over with…but this year…a full 12 months…we did it. I can safely say that 2010 was the worst year of my life, from losing Conner, losing people I loved, losing comfort in this world, yet gaining a realistic expectation of what this world is all about, I think it’s safe to say we just kind of held on and survived 2010. I was so sad ringing in 2011, because my heart knew it would be our first entire year without him, that reality was settling in even more than I could imagine…that we’d be faced with some of the hardest challenges of our lives, and I was right. </font></p> <p><font color="#ff80c0" size="3" face="CoolDots">2011, while not the worst year of my life (lets face it nothing compares to 2010), was the most difficult so far. in 2010 all I had to do was show up, I didn’t even have to dress nice…or smile…or worry about what anyone was thinking of me or my family, or judging our expressions of pain…that years' motto was “fake it till we make it!”</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">but this year…</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">well, while the pain didn’t change…I found it even more difficult because the grief intensifies overtime…I thought I knew what pain was when I watched him being carried from my home covered in a blanket…dead, never to return again…and that was painful…excruciating to say the least, just the thought of that brings me to tears (I don’t often think of that day/night)…but you reach a certain point in the journey where the world just thinks your ok…that all is well, and if I have a down day, I had better learn to keep it at bay, or face people’s criticism of how I should be “thankful” or “moving on”…and that hurts equally as bad. see it’s not like a stubbed toe that causes immediate reactionary pain..but then lessens over time…he’s a child. was a child. living. breathing. I held him. he called me momma. he was my first child. and many who never met him just couldn’t believe how gentle of a spirit he was. rarely angry, never complained…loved to be held and to hug, and always told us how much we meant to him. his smile melted my soul. I wasn’t done with him yet. I wasn’t ready for it to be over. to be forced to let it happen. I didn’t want to tell him to go that damn night, it was a choice…I didn’t want him to feel bad for not being able to stay any longer. I didn’t want him to die there, I didn’t want it to happen that way. but as all moms know…it’s not about us. it’s always about THEM. each damn day I wake up knowing he’s gone. and there’s not a damn thing I can do about it. I have to be ok with it. so I find a way to get on with the day. But I can say that this year he wasn’t always the first thing I thought of each morning with pain…so there has been progress. I no longer have any clue when it’s a Thursday as I once did. I don’t know how many weeks, or days he’s been gone. progress for sure. my life, my world revolved around all that crap last year. it held significance. the day of every 24th I barely take notice…</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">but…</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">so much has stayed the same in my heart. I think of him now with great joy…and great hope…not always just sorrow. I’m a better person for knowing him, and I am so extremely blessed to have been chosen to be his mother…what a honor. I’ve found a bit of peace in this circumstance…because I know that life is for living…and I’m well aware of how it can be gone in an instant. the world owes me nothing. </font></p> <p><font color="#ff80c0" size="3" face="CoolDots">I think about how our family dynamic has changed this past year. hunter is such an amazing biggest brother…he stepped into the role with pride, and it melts my heart to hear him still speak of Conner each day, tell me different things they used to do together, things he missed…how much he loves his big brother in heaven, he points out Conner’s star at night…having him be so vocal about his brother, helps me to feel like he isn’t just a memory. many people are done talking about him, or speaking his name…but in our home…his name is a constant…and it’s always said with a smile or a laugh. it’s an incredible blessing…</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">all of these are just difficult changes to deal with. it’s a new normal that we have to face…and it is constantly changing. Conner was 7…and this coming year Hunter will be 7…how will that feel? He’s going to outgrow Conner’s biggest clothes…how will that feel to have to buy bigger sizes that I should’ve already gotten years ago for Conner? there’s still so many things evolving and constantly changing…so there’s just no way that everyday can be so bright and happy. I started this blog for brutal honesty. so I won’t pretend or candy-coat a thing. </font></p> <p><font color="#ff80c0" size="3" face="CoolDots">I cry still, very often…but in the privacy of my alone time…because now the pain when it strikes it’s much deeper than before…I “get it” more now. pictures and memories are all I have now. I understand that. I don’t remember the last time he walked thru my door…and I no longer expect that he will. crying in the beginning is so raw…it’s just screams, wails…intense, overwhelming pain. it’s part shock…part unbelief…part denial…but now…crying is deep sorrow. it’s choking down your throat, instant ugly cry…that vibrates down your entire being. my fingers to my toes tingle, I get hot, my head pounds in pain…and my heartbeat increases dramatically. </font></p> <p><font color="#ff80c0" size="3" face="CoolDots">it’s a more healing cry than before…but hurts…hurts like hell.</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">I’ve learned so many lessons this year…the majority of it was spent in character building mode. learning who I am now. who we, as a family, are now. learning how to honor Conner and find some healing peace. I just want peace in my soul.</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">so much is thrown at us when we least expect it…from mail arriving in his name, fighting the IRS about him on our taxes…even to the most recent horror…someone vandalizing his “spot” at the cemetery…and it hurts. all of it. but somehow in it, we find HOPE for tomorrow…and try to keep our focus on the fact that today is so temporary…and that many of life’s struggles are really just sidetracks, or details…not of lasting importance…</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">I believe that 2012 is going to be a better year for us. It’ll still be hard, and that nagging pain won’t ever cease…but I have HOPE that we’ll find a way to handle it. gracefully. lovingly. respectfully. God has carried us for the past year and a half…not one day have I taken one step on my own two feet. there’s simply no way I’d be where I’m at today without His strong arms. </font></p> <p><font color="#ff80c0" size="3" face="CoolDots">I just pray for all the newly bereaved parents I’ve met over this past year…I pray that you find some HOPE that your worst year is nearing it’s end, and that next year, will still be as painful…but also a bit more joyous. </font></p> <p><font color="#ff80c0" size="3" face="CoolDots">So do I miss him? undoubtedly!</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">will I ever get over it? never ever!</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">do I cry? very often.</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">but do I smile? more than I cry!</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">do I dwell in the past? not as much as I live in the moment.</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">and if I could sum up my expectation of 2012…I’d say it’s going to be the year of our greatest joy, love and HOPE…</font></p> <p><font color="#ff80c0" size="3" face="CoolDots">My song for this year…</font></p> <div style="padding-bottom: 0px; margin: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: none; padding-top: 0px" id="scid:5737277B-5D6D-4f48-ABFC-DD9C333F4C5D:31517192-7fea-450a-b3d0-5e029c68a41a" class="wlWriterEditableSmartContent"><div id="50b04aba-27fd-45f5-92a4-0cc4a151ddfe" style="margin: 0px; padding: 0px; display: inline;"><div><a href="http://www.youtube.com/watch?v=ugD0i5Y3cw8&ob=av2n" target="_new"><img src="http://lh5.ggpht.com/-55jNLRagQLc/Tv6zASDBahI/AAAAAAAABI4/bvr4wNwo00A/video7fdcbf7ca682%25255B4%25255D.jpg?imgmax=800" style="border-style: none" galleryimg="no" onload="var downlevelDiv = document.getElementById('50b04aba-27fd-45f5-92a4-0cc4a151ddfe'); downlevelDiv.innerHTML = "<div><object width=\"448\" height=\"252\"><param name=\"movie\" value=\"http://www.youtube.com/v/ugD0i5Y3cw8?hl=en&hd=1\"><\/param><embed src=\"http://www.youtube.com/v/ugD0i5Y3cw8?hl=en&hd=1\" type=\"application/x-shockwave-flash\" width=\"448\" height=\"252\"><\/embed><\/object><\/div>";" alt=""></a></div></div></div> <p><font color="#ff80c0" size="3" face="CoolDots"></font></p> <p><font color="#ff80c0" size="3" face="CoolDots">Love Love Love my friends and happy new year!</font></p> <p><a href="http://lh5.ggpht.com/-BEvkMFy0pPU/Tv6zAkKkD0I/AAAAAAAABJA/Ri3-ukF5_UY/s1600-h/004%25255B5%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="004" border="0" alt="004" src="http://lh3.ggpht.com/-nL_YbkKrbe4/Tv6zA0sNSAI/AAAAAAAABJI/BeuY1xIZ3Zk/004_thumb%25255B2%25255D.jpg?imgmax=800" width="434" height="326" /></a></p> <p><a href="http://lh6.ggpht.com/-bUKWp4PWLD0/Tv6zBMOffEI/AAAAAAAABJQ/k8NY5iOvfGw/s1600-h/GetAttachment%25255B4%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="GetAttachment" border="0" alt="GetAttachment" src="http://lh5.ggpht.com/-N48J4z9oRXg/Tv6zBrEkLvI/AAAAAAAABJY/4NTq6AtT5UU/GetAttachment_thumb%25255B2%25255D.jpg?imgmax=800" width="432" height="289" /></a></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com2tag:blogger.com,1999:blog-3753922795485552054.post-25572093143615769812011-12-22T20:24:00.001-08:002011-12-22T20:30:31.695-08:00A mission of MAJOR awareness!<p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">My Good friend, Josh Mogren has been working on a super secret (but not so secret) Moganko CF awareness video for quite some time. Moganko became a part of our family LONG before the Mogren’s ever did. </span></p> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">See…our sweet Conner you all know suffered from Cystic Fibrosis, but Moganko video’s brought joy, smiles and most importantly long BELLY laughs into our home in some of our darkest hours. Connerman loved his grover, I think that’s why he latched onto Moganko so quickly. There was never a place we went without Grover, he helped make the treatments of CF less painful and a whole lot less scary. If Conner had a surgery, Grover went and had the surgery as well, if Conner was away from home, you better believe Grover was with him, and even in death, Grover is taking care of him in heaven…here are just a few of his pictures with his Grover </span></p> <p><a href="http://lh3.ggpht.com/-Qqtwn5lf7ms/TvQCXq70ZOI/AAAAAAAABHQ/YNor4baCcV0/s1600-h/dscn02445.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="dscn0244" border="0" alt="dscn0244" src="http://lh6.ggpht.com/-m9TTM0tuAbI/TvQCX4mWdxI/AAAAAAAABHY/2ZfMnUmhx_8/dscn0244_thumb2.jpg?imgmax=800" width="366" height="275" /></a></p> <p><a href="http://lh5.ggpht.com/-DdtYklIsCBE/TvQCYIcouOI/AAAAAAAABHg/YTQreddQK4A/s1600-h/dscn19265.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="dscn1926" border="0" alt="dscn1926" src="http://lh4.ggpht.com/-t1b0QiWDY1s/TvQCYcKC8JI/AAAAAAAABHo/MyjIKZ83kNU/dscn1926_thumb2.jpg?imgmax=800" width="373" height="281" /></a></p> <p><a href="http://lh5.ggpht.com/-M7VcvGzF0pI/TvQCYsOaWgI/AAAAAAAABHw/s8lBavJZKdQ/s1600-h/100_14914.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="100_1491" border="0" alt="100_1491" src="http://lh4.ggpht.com/-4H1f28RIs7A/TvQCY6e0y5I/AAAAAAAABH4/TJ7k8xHajk0/100_1491_thumb1.jpg?imgmax=800" width="357" height="239" /></a></p> <p><a href="http://lh6.ggpht.com/-vZ27kqPoNpI/TvQCZEh10SI/AAAAAAAABIA/rsQ3fcuPVf8/s1600-h/0055.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="005" border="0" alt="005" src="http://lh5.ggpht.com/-6PHlo9j-F6s/TvQCZQ4L1HI/AAAAAAAABII/8UThHHeMkHY/005_thumb2.jpg?imgmax=800" width="296" height="394" /></a></p> <p><a href="http://lh3.ggpht.com/-6uhmrl1UOps/TvQCZnF8MaI/AAAAAAAABIQ/FnSWgAAtIu4/s1600-h/00510.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="005" border="0" alt="005" src="http://lh6.ggpht.com/--Ew66z0Pduo/TvQCZypSpzI/AAAAAAAABIY/GcjLZrZWbJs/005_thumb4.jpg?imgmax=800" width="310" height="234" /></a></p> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">Then when Josh appeared in our lives, from the very first Moganko video we watched, we were all drawn to him. Conner sent him messages and even tried to make his Grover come alive like Moganko for Josh’s birthday in 2010…</span></p> <div style="padding-bottom: 0px; margin: 0px; padding-left: 0px; padding-right: 0px; display: inline; float: none; padding-top: 0px" id="scid:5737277B-5D6D-4f48-ABFC-DD9C333F4C5D:a1f1e1ca-1072-4342-aeab-47775f0b5852" class="wlWriterEditableSmartContent"><div><object width="320" height="240" ><param name="allowfullscreen" value="true" /><param name="movie" value="http://www.facebook.com/v/385875061316" /><embed src="http://www.facebook.com/v/385875061316" type="application/x-shockwave-flash" allowfullscreen="true" width="320" height="240"></embed></object></div></div> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">It truly was an amazing connection that Josh and our Conner had built in a very short amount of time. We’d skype each other while stuck in the hospital, or even from home, since we don’t live anywhere near one another. I remember the evening we lost Conner, I didn’t want Josh to learn about it on facebook…so I did everything I could to get ahold of him so he’d hear it from me, not sure if that happened because we all know how news travels so quickly…but out of Conner’s death our families’ have remained very connected…and shortly after Conner passed Josh and his wife Carly came to Washington with Moganko in tow and we were blessed to meet them!</span></p> <p><a href="http://lh4.ggpht.com/-IKYXGUecPL0/TvQCaNgTEdI/AAAAAAAABIg/NCEr7FpiV1w/s1600-h/0444.jpg"><img style="background-image: none; border-right-width: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top-width: 0px; border-bottom-width: 0px; border-left-width: 0px; padding-top: 0px" title="044" border="0" alt="044" src="http://lh5.ggpht.com/-16FkHcFTk-M/TvQCaPmExiI/AAAAAAAABIo/XrmG8scz3Ec/044_thumb1.jpg?imgmax=800" width="382" height="288" /></a></p> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">So today marked the release of Josh’s CF awareness project that is going to bless the CF community, and I just know it’s going to spread around the country, world even, and bring light to the LEADING KILLER OF ALL GENETIC DISEASES…because a cure is needed, there are thousands being born with CF and dyeing from CF every single year, one dyeing each and everyday and many of them are children and young adults. A median age of early 30’s, while better than when Conner was first diagnosed, is still far too young. These individuals fight their entire lives to breathe, gain weight to stay healthy, live with PICC and ports, Iv’s, inhaled medications, chest physiotherapies and countless enzymes. They spend weeks even months in emergency rooms, hospital rooms and ICU’s, their parents watch as each breath is a struggle and beg and plead for a miracle cure. </span></p> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">BECAUSE THERE IS NO CURE…</span></p> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">Advancements are being made each day with the help of wonderful donations to the cf foundation, and families are getting much needed financial assistance to help cover tremendous expenses from organizations founded by people living with CF….but every breath should be easy, while on earth…because I hate the term “breathe easy in heaven…” everyone has the RIGHT to breathe free while here as well.</span></p> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">Without further ado…I want to spread Josh’s love to you all….and I encourage you to share it with all you know…</span></p> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">we WILL make CF stand for CURE FOUND…and this is a HUGE way to impact thousands…</span></p> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">Blessings and LOVE to you all, especially to you JOSH MOGREN…for spreading hope, courage and LOVE to the thousands living and dyeing from CF…paste the link below into your browser...and ENJOY...then SHARE!!!!!</span></p> <p><span style="font-family: segoe script; color: rgb(255,128,64); font-size: 100%">LOVE LOVE LOVE</span></p> <p><a title="http://www.mogankoforcf.org/" href="http://www.mogankoforcf.org/"><span>http://www.mogankoforcf.org/</span></a></p> <p><span></span></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com2tag:blogger.com,1999:blog-3753922795485552054.post-84889487101859671382011-12-17T23:34:00.001-08:002011-12-17T23:34:37.479-08:00Like a flood I couldn’t stop…<p><font color="#338c8c" size="4" face="CoolDots">Today marked the first time I’ve stepped foot in one of those places in…well probably around 19 months…it all came right back. the smells, the beeping, the hussle and bussle, everything. it caused me to remember so much of a life that I was forced to leave behind. medication routines, hell even names of those 17 medications and their dosages. in my past life that info rattled out of my mouth without thinking…but I’m so far removed from that world..that old me that it shocked me tonight just how much I’d forgotten…well until it came back to me. the beeping…oh lord the beeping.  the waiting. the wondering. the feeling that time stands still in those walls. it’s truly a world all it’s own. and one that used to be mine…but hasn’t been for so long. </font></p> <p><font color="#338c8c" size="4" face="CoolDots">I remembered what it was like to be in that fight. to advocate for him. to wait on dr’s, nurses and tests. I loved that life. it’s all I ever knew for 8 years. it made me feel like I could do anything…that my opinion…my hardwork would count for something…when in the end, it would never be enough. I remember sheltering him from pain…protecting him from unnecessary shots, tests and procedures. I remembered the absolute solid LOVE he felt for me and showed me in a single glance. he had my heart. and he trusted me with his. </font></p> <p><font color="#338c8c" size="4" face="CoolDots">we were an amazing team.</font></p> <p><font color="#338c8c" size="4" face="CoolDots">mother and child.</font></p> <p><font color="#338c8c" size="4" face="CoolDots">a love that nothing in this world could ever compare to. a bond that even in death can’t be broken.</font></p> <p><font color="#338c8c" size="4" face="CoolDots">yet because of the depth of trust and love, because we spent each moment together in sickness fighting or in health, loving and laughing, it makes the pain of his absense so unbarable so often. I felt needed in a way that I probably never will in my life again. my husband and two living children need me, and others need and count on me as well…but a parent of a terminally ill child understands that is a need of it’s own variety. that is an intense, special, protected and once in a lifetime bond that is too big for words. I needed to fight for him to feel like I had some control over his decline (though I know I didn’t), doing everything for him was my life. my joy. my purpose. </font></p> <p><font color="#338c8c" size="4" face="CoolDots"></font></p> <p><font color="#338c8c" size="4" face="CoolDots">the ER.</font></p> <p><font color="#338c8c" size="4" face="CoolDots"></font></p> <p><font color="#338c8c" size="4" face="CoolDots">I wish I didn’t have to visit you tonight…but I had to. there was no way of getting around it, and honestly didn’t think twice about it til I got back to a room…</font></p> <p><font color="#338c8c" size="4" face="CoolDots">then his life…our life that is no longer ours…all came rushing back to me…</font></p> <p><font color="#338c8c" size="4" face="CoolDots"></font></p> <p><font color="#338c8c" size="4" face="CoolDots">oh how I miss him…</font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com1tag:blogger.com,1999:blog-3753922795485552054.post-38665759082551202532011-12-09T17:19:00.001-08:002011-12-09T17:19:39.101-08:00Handle with care…<p><font color="#ff80c0" size="3" face="Segoe Script">Much of this journey called grief I still don’t fully understand. I try…and I know little by little, in time…I will understand much that I don’t know today. there are a few things I do know for certain…and I feel it appropriate to share them…there have been so many families torn apart this past month in particular, by CF or other causes…and I’ve seen so many people unintentionally cause pain to those deep in grief simply by well meaning comments that are actually, not at all helpful to the families. I’m not trying to make anyone feel bad or guilty..but being on this side of life I know firsthand how much a comment while said with a loving heart and caring spirit, can stick with a person and hurt them very deeply. maybe the person will never express the pain it caused…but it will always kind of be there…there are many comments and situations that still now I struggle with from time to time. forgiveness and love are there too…but something comes up that may trigger it…and today I just needed to pray for a peaceful heart. I felt angry all over again. so please just know this is from love…</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script"></font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">please don’t ever say to a grieving friend:</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script"> “it wasn’t meant to be”</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">“God needed another angel”</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">“now he can breathe free”</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">“no more pain”</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">“everything happens for a reason”</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">“god has a plan”</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">or comments of that sort. while we fully know the pure intentions meant behind the words…as a parent whose lost a child…when someone has said something like that to me it enrages me. trust me that I know god has a plan…and I would rather Conner be free from pain…and I do believe he’s in heaven, whether or not he’s an angel is unknown…but here’s what I know. I’d still rather have him here with me. and any parent whose lost a child would say the same thing. when I see these or comments like these posted to people…I just cringe. these comments are in no way helpful.</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">an alternative…a simple “I’m so sorry for your pain…or your loss” is a phrase that is genuine and touches deeply in our hearts. because nobody can change the outcome of the situation, and we don’t expect people to…we just want to be able to express our pain freely and have people love us in the pain without trying to justify it somehow or candy coat it. when someone says I’m sorry…it’s the best two words that I could ever imagine hearing.</font></p> <p> </p> <p><font color="#ff80c0" size="3" face="Segoe Script">please don’t ever do to a grieving person:</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">when they express pain…don’t change it to your own pain comparison. it’s not helpful, and it’s actually quite hurtful. what it says to a parent whose hurting is that our pain isn’t unique..and isn’t important on it’s own. that it doesn’t matter. I absolutely believe and know that each loss causes a great deal of people so much anguish and pain…but the pain the immidiate family feels is unlike any other person will feel…so turning their comments of pain into your own sadness or your own grief really sends the message that our pain isn’t justified. and that my friends hurts the most.</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">instead…parent to parent of childloss we know the pain the other family is feeling so comments like that almost never happen…but even distant family or friends who feel the loss as well should just simply send prayers, offer love or to help in some way…and never compare the pain that is so different…its hard to explain but it is just painful. </font></p> <p><font color="#ff80c0" size="3" face="Segoe Script"></font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">please…also…</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">don’t go overboard talking about the loss…as well as ignore it and never talk about it…it’s a very delicate balance…but follow the cues of the person in pain. somedays they will want to talk about them a lot…or the pain all day…and somedays just don’t even want to mention the name because the pain is so intense…or they simply want a day to not think about it.</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script"></font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">please don’t forget the person/family after the dust settles: </font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">some of the people that huddled so close to us before, during and immidately after Conners passing are no where to be found anymore. not so much as a text to say hello…or anything. and that’s very hard. so while it’s so important to be there when everything is new…and the pain is outwardly raw…I think it’s even more important to be there for the long haul. doesn’t mean you have to call everyday or anything like that. each family needs their own balance, definitely. but to go from being so close to someone…maybe even sharing in the death of that person which is a moment that forever changed us…and then to not hear from them much later…just hurts like hell. </font></p> <p><font color="#ff80c0" size="3" face="Segoe Script"></font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">November I can’t even count how many we lost to CF. young and old, even a brand new baby. and right now a dear family is batteling the loss of a precious soul who reached out to us in Conners end days…I ask that you pray for <a href="http://www.caringbridge.org/visit/spencerriddle/journal" target="_blank">Spencer Riddle</a> and his wife, Nikki. Please send love and prayers to this beautiful soul as he’s spending his last days with his new wife…in a hospital bed barely holding on. my heart breaks for you Nikki. and one thing for certain…is you can count on me to be there to check in on you for years to come…because all we have in this world is love, friendships and time. and there is no better way to spend time then loving others….</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">never be afraid to reach out to someone grieving…many days they are completely ignored…and what a difference even just a hello or a genuine smile can truly make…</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script"></font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">blessings to you all…</font></p> <p><font color="#ff80c0" size="3" face="Segoe Script">and as always…<font color="#ff0000" size="6">LOVE LOVE LOVE</font> because nothing else matters…</font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com2tag:blogger.com,1999:blog-3753922795485552054.post-39554723483252776612011-11-27T16:18:00.001-08:002011-11-27T16:18:13.021-08:00reality check<p><font color="#338c8c" size="3" face="Segoe Script">Another Holiday Season is upon us now. in full swing. thanksgiving with Brad’s family, Black Friday shopping and yes even a Christmas tree. Where did the year go? I can’t believe we’re inching closer to completing our first calandar year without Conner with us. He sometimes seems as if just a distant memory. I’m sure that sounds strange…see of course I remember him and have years of amazing memories to hold close…but the specifics…how he would be now as an 8.5 year old…it’s all surreal. I am amazed at all the little things Hunter can recall…about video games they played together and there are many times that I just can’t remember what he looked like cuddled on his favorite end of the couch. how does that happen? it makes me feel like it’s all just a bad nightmare. it’s hard to pick hunter up from school and his school best friend has an older brother that was conner’s bestfriend at that same age. to see how old he is now, all big in the 3rd grade and just wondering how conner would look like, would he still be my sweet boy or start to test the waters and get a little boy attitude….? I’ll never know. I think what may be hardest is this year we know he’s gone…last holiday season we were still a bit in shock and wishing that he’d be there someway, somehow…but now a year later we know he won’t. we’re not really hoping for it anymore. does that make sense? </font></p> <p><font color="#338c8c" size="3" face="Segoe Script">reality is cruel sometimes.</font></p> <p><font color="#338c8c" size="3" face="Segoe Script">it’s hard to really write these truths out…I feel a bit like a broken record…like maybe I’m not really entitled to hurt openly anymore…it’s been too long. maybe I’ll be seen as weak, depressed, out of hope…broken…but what I really, truly am…is a mom whose hurting. who will always hurt. a beautiful boy that meant so much to us is no longer with us but in memory and that’s something that time can never take away. I guess I hope that in some way my being honest is providing reassurance or hope to another family struggling with grief somewhere. I know my story is not at all unique. there are many moms and dads in this club…and I wonder if they too feel they have to now suffer silently since maybe it’s been awhile…but I feel that if I lie and deny the truth…and the pain that I’m really saying that he didn’t matter…that his death wasn’t the single most defining moment of my lifetime. and I’m not one to lie. nor would I ever limit his lifes meaning to just a year of mourning. how could i? </font></p> <p><font color="#338c8c" size="3" face="Segoe Script">Sweet Hunter’s been having nightmares of Conner…waking up screaming in the night for me or Brad. it’s heartbreaking when we have no good or satisfying answers for him. only hugs and kisses and prayers to comfort him. seems so inadequate in the grand scheme of his pain. </font></p> <p><font color="#338c8c" size="3" face="Segoe Script">there are less and less nights where brad or I cry ourselves to sleep…but the pain is still there like it was the night he left. I don’t believe that time truly heals…I think time brings a bit more reality of the situation…and you learn ways to cope. more and more I find my brain taking me back to that last day with him. I recall sights, sounds, people, laughter, tears, prayers, oxygen buzzing, phone conversations, visitors, flowers, I remember the look on his face…I remember the panic in his eyes…I remember every little detail…and it paralyzes me. then I recall the aftermath, the funeral, the generosity of strangers, burying him, all of it. before now my brain hasn’t really let me think of the details…the details are painful. </font></p> <p><font color="#338c8c" size="3" face="Segoe Script">I remember the feeling of deep sadness grieving the loss of his CF docs in our lives as well. I had to let every detail of his life go. I had to mourn it all one by one. his future, his wishes, his presence, his teams of drs, his friends…and I thought that after spending so much time with the CF team fighting, strategizing, and talking together that I’d never be able to move on. to find a new identity really. the old me had to die too. what a difficult process. I held on so tightly. but I had to let it go. and now I know for sure that I have let it go. I still think of the CF team with great affection and love…but I don’t “need” them like I thought I did…like the old me did. I’ve found a new me…one with different meaning, different goals and a whole new perspective on life. I still participate in the CF walk each year and help sell CF wreaths for the holidays…but other than that I’ve taken a HUGE step back from CF. I had to decide that it could no longer be a huge priority in my new life. CF stole so much from us already, and I couldn’t continue to let it take time away from my precious living family. and I’m very much ok with that now. the old me would never even dream of doing that! but Bradyn and Hunter deserve all of me now like they never had before…and I love having some stability in our lives…not having to worry about our next trip to the ER or the hospital…</font></p> <p><a href="http://lh4.ggpht.com/-ADuaIXkOiig/TtLTQjxn52I/AAAAAAAABHA/0N08J8khE2o/s1600-h/014l%25255B6%25255D.jpg"><img style="background-image: none; border-bottom: 0px; border-left: 0px; padding-left: 0px; padding-right: 0px; display: inline; border-top: 0px; border-right: 0px; padding-top: 0px" title="014l" border="0" alt="014l" src="http://lh6.ggpht.com/-sT3jDF6t4II/TtLTRLsHpdI/AAAAAAAABHE/IBlm05stVrI/014l_thumb%25255B3%25255D.jpg?imgmax=800" width="270" height="404" /></a></p> <p> </p> <p><font color="#338c8c" size="3" face="Segoe Script">A new life full of free time that we never had before. it’s bittersweet for sure. I’d rather have Conner here with us…growing and loving with us here in our home…oh to have him within arms distance…I can’t imagine how wonderful that would feel to hug him…but now I know that for sure I won’t be able to do that on this earth. he’s not coming back. and I must make the most of the time I have here to love my family the way they deserve and the way that makes me feel whole again. if only for a moment…</font></p> <p><font color="#338c8c" size="3" face="Segoe Script"></font></p> <p><font color="#ff0000" size="7" face="Love Letters">Love  Love  Love</font></p> Sarahhttp://www.blogger.com/profile/07744754011059856264noreply@blogger.com2