Free...

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.
I was so wrong.
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....
sweet Connerman...I couldn't have been more wrong.
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. 
I'm sorry. I was wrong.
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.
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...
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. 
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.
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. 
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. 
So instead of apologizing anymore sweet boy how about a promise....
Now that we're again evolving ... I am going to be more authentic in my journey. 
I'm dropping the facade and canning that stupid charade. 
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. 
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. 

This moment...

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.
i'm not perfect. but no one is.
I've made mistakes. but we all have.
 I've lived behind masks and built walls so high they could be seen from space, and where did it get me?
Here.
right here.
in this exact place in this exact moment.
and in this moment, i'm not perfect...but i'm ok.
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.
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.
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.
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.
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.

but....

right now...
i'm not ok.

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.

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.

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.
who I am.
who I am not.
what I stand for.
what I will not stand for.
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...
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
i'll never be the same.
but I know i'll be ok. 

JOY. filled. HOPE

Crying.

Elated.

Satisfied.

Thrilled.

Emotional.

Empowered.

Vulnerable..but now…

Successful…

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.

she was admitted into the hospital I spent so many years of my life in with him…fighting.

it was intensely difficult.

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.

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.

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.

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. Not leading with my heart. Letting my mind stop long enough to listen to what my HEART was screaming.

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…

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.

She had clinic yesterday.

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.

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.

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.

 

So don’t give up. Never settle. Don’t quit.

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!

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 notsobrightandshiny to joyfilledhope.com

LOVE LOVE LOVE

always always always

Happy 1st Birthday sweet Brynlee HOPE

Sweet baby girl…one short year ago you arrived into our family and changed our world forever.

Your sweet smile,

Your always happy personality.

Your deep love for your brothers.

You’re the greatest addition and have made our hearts grow larger!

A look back at how you’ve grown this first year…

It all began July 11 2012…

 

Happy First Birthday sweetness! And MANY, MANY MORE to come!!!

Love Love Love

Fast forward 3 years…

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.

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…really LIVE 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.

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.

But Conner never did.

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.

what a life.

what a tremendous blessing.

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.

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.

thank you Conner.

thank you god.

If you celebrate your “move up to heaven day” up there babe…may it be the best celebration ever.

I love you forever…always always always.

It’s been awhile…

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.

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!) 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.

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!

Blessings…

she is love…

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.

His truth.

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.

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.

She is not hurt. She is not to feel sorry for. She is nothing short of HOPE.

and to anyone who can’t understand that, I pray you don’t miss the point of it all.

it’s not our decision.

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.

She is not a decision.

She is love.

Holding on to HOPE…

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.

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!

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…CF doesn’t have that power over our family any longer. 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. 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.

having said that…

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.

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 nothing to do with what she will become. 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.

because we are blessed.

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.

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

HOPE

I dare you to truly LIVE…God did not give us a spirit of FEAR…but one of HOPE and assurance…

hold on to his promises…

26 days…

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.

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.

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.

nothing.

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…

MECONIUM ILEUS.

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.

I will spare many details because I will link her Caring Bridge site HERE so you can go there to get all the details of her journey (you have to create a login)

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

CYSTIC FIBROSIS…

yES… the disease that stole our son now has it’s grips on our sweet daughter.

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…

I will leave this post now with some pictures from her first month.

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…

she’s our warrior…

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…

Be blessed…

(in order from first born and on…)

her beautiful “birth mark” will always prove to those who know her just how strong she really is!

Love Love Love