My arms are empty and acheing...

I can’t believe I’m a mother without…

Life has been twisted and turned upside down. As a mother, I had both the wonderful privilege of holding my sweet son as I brought him into this world…and the horrible chore of holding him as he took his last breaths and left this world, at only 7 years old. June 24, 2010 he earned his angel wings, passing away after an inspiring but brief fight against Cystic Fibrosis. Now I live, solely focusing on living a life to get to be with him again in heaven, and to raise awareness for Cystic Fibrosis research. I am dedicated to a cure, not only for my sweet sons legacy but so that other CF families never experience the greatest loss of their lives that we are now facing. My mother’s arms are missing Connerman, yet he still inspires me daily to leave a mark of LOVE on this world…so for you my sweet prince, mommy will try!



Love Love Love

Always Always Always


Friday, December 7, 2012

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!) Smile 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…

097

Tuesday, October 23, 2012

she is love…

005

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.

067

Sunday, September 16, 2012

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…

IMG_9814

Friday, September 14, 2012

26 days…

IMG_9684

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…)

062

074

088

103

113

120

130

141

144

190

006

031

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

Love Love Love

Wednesday, September 5, 2012

Miss Brynlee…a blessing in the rain…

012

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….

well I was wrong.

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 Smile) 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…

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 Smile.

016

042

043

 

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!

018

Monday, July 9, 2012

No coincidences…

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…

Two years ago as I was sending my beautiful son to heaven saying LOVE LOVE LOVE 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) 7 years ago. Adding to our family in the 7th month of the year, whose birthstone is RED.

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…

016

 

So I’m just awaiting her arrival…smelling of LOVE LOVE LOVE in a month of RED birthstones…

coincidence? I think NOT!!!!!!!!!!!!!

love love love

**btw I am not endorsing the above mentioned product, I’m simply giving God a SHOUT out for his plan and blessings..**

Tuesday, June 26, 2012

In my weakness I am strong…

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.

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.

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.

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.

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.

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.

wow.

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."

crying may not be fun, but it’s necessary…that’s one thing I know for sure…

Love Love Love

 

Monday, June 18, 2012

Your last week here…

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.

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.

022

036

what a precious smile you had.

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.

it saddens me to think about this joy you had then only 12 or so days later you were gone.

gone.

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.

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.

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.

013

and sometimes I glance at pictures of Hunter and I see you in him.

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.

022

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.

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…

The pain you carried in your eyes and the exhaustion your body endured that last week broke me into pieces…

028

037

370

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.

I had so much more to say…but my heart is so broken right now that my mind is blank. I miss you buddy.

I will leave you with the song that is helping me thru lately…

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.

gone is the cruelest of realities…

 

Thursday, May 31, 2012

Roller Coaster of life…

rollercoaster

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.

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?

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.

yet thru it all I’m still standing.

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.

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.

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…

blessings and LOVE

Wednesday, April 18, 2012

Conner’s 9th Birthday

013

 

Spent the morning at Opening Baseball ceremonies for Hunterboy…

 

011

 

Spent time at home together, the 4 of us…then up to the cemetary we went.

 

015

 

Conner’s grave…22 red balloons to send Hunters big idea to heaven…

 

017

 

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!

 

020

 

with mommy…

 

025

 

With Daddy…

 

031

 

Off to heaven they flew!

 

034

 

Straight to the one we love, cherish, miss and think about every moment of everyday…our sweet son and brother…

Conner

Super Soaker

Tuesday, March 27, 2012

breath by breath…

013a

 

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!”

guess I finally believe it all the way now.

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?!

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.

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.

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.

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.

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…

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…

blessings and LOVE…

2010-04-01 002

2010-04-01 017

2010-04-01 036

 

Thursday, February 23, 2012

The color of panic AND love

I was about 11 or so weeks into my pregnancy when it happened.

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.

lots and lots of blood.

I had to change even my pajama pants, I was drenched.

I was freaking out.

I got back to bed and realized the sheets were soaked as well, this I knew was not good. it wasn’t just spotting.

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…”

wow. ok.

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.

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.

I was still bleeding heavily.

the baby looked great, strong heartbeat, no sign of any miscarriage.

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.

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.

I was out of my house for I’d say 2.5 hours….

then I felt it again.

it’s just a horrible feeling really.

blood when you know you shouldn’t be bleeding…

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.

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.

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.

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!

words to soothe my fragile soul…

this is the main reason we didn’t tell sooner of the pregnancy, I wasn’t sure how it was going to turn out.

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?

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…

he is soooooo good to us.

Blessings and Love

Monday, February 13, 2012

Our sweetest Valentine…

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…

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!)

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.

I honestly can’t really explain what happened that changed that.

but something did.

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.

but that changed.

we took the power back and refuse to give even a fraction of it back.

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.

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…)

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…

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!

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.

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.

that will be all for tonight…momma’s getting sleepy (as always), so I’ll post again soon…

LOVE LOVE LOVE

and a little Hope too!

050a

 

Monday, February 6, 2012

Part 1…

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.

imagined it.

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.

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.

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.

I wasn’t hearing voices…I was experiencing God.

how amazing to finally make peace with that and understand it.

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.

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.

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.

and somewhere in all of this…we’re learning how to live again.

fully live again.

dream.

grow.

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.

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.

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!

031

WE’RE EXPECTING!!!!!

 

 

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…

One story I can’t wait to share though…

027a

How we KNEW that Pink is our new blue…God is So good…

 

 

Related Posts with Thumbnails

Did You Know....

There are over 100,000 people, the size of a small city, on the transplant list in the US.

There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).

In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.

From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.

click here to join the organ donation registry

BECOME AN ORGAN DONOR, SAVE A LIFE!