Joy in hard places…

This was written by a beautiful woman who is a wife, mother to 3 children, and a cheerleader in life.  This is shared with her permission.

I will never forget my 20-week ultrasound with Connor. The sheer excitement that came with wanting to see my very first baby’s face, finding out the gender and more importantly, getting the thumbs up that all the measurements were good and I was carrying a healthy baby. I remember drinking the liter of water that morning with great JOY prior to walking into the room! 

That day didn’t end as I had planned. I’ll never forget the look on the technician’s face when she stepped out to get a “second opinion”. I’ll never forget the panic I felt in that moment. I’ll never forget how quickly they swooped us over to see a fetal cardiologist. I’ll never forget the sound of the doctor’s voice when they told us our baby was missing the center of his heart…a portion of all 4 chambers was missing, how could that be? I will never forget when they offered us an amniocentesis because our baby’s heart issue was normally consistent with Trisomy 21…Down Syndrome. I’ll never forget any of it…the pause, the pain, the pleading with God, the panic. 

That day was 14 years ago! 14 years, how can that be? So much has happened, so much has transpired. So many milestones, miracles and marvelous moments that have shaped our journey. How I remember the smell of Connor’s body and breath when I snuggled him for the first time. The shape of his eyes, his funny crumpled ears (that have since become my favorite feature because they are shaped like hearts), the sound of his cry, the look of his fingers holding tightly to mine…I was in love…I still am! How I recall those first 5 days…no wires, no monitors, no oxygen, no medicine, no iv’s…my nursing baby lay at my breast…content and so was I. Sure, he had Down Syndrome…Sure, I knew that things wouldn’t be quite “normal”. Sure, I anticipated the surgeries that would be required to fix his little broken heart, but he was ALIVE! I remember the doctor that diagnosed Connor when he was still in my womb…he prepared us for delivering a baby who would not live one hour, let alone 5 days! So, I was in bliss…he was mine and I could swaddle him and nurse him and show him off! 

And then it happened…Life changed in an instant when he wasn’t breathing right and he stopped eating. Straight to the hospital we went! We said goodbye to his room that was fully prepared; masculine in detail with intricately appointed blue walls and brown trim. His closet, full of the coolest and cutest outfits a little boy could wear…spoiled rotten (still is)! Toys in every corner! His name, “Connor” and the meaning of his name, “Stronghold of God” painted on his wall declaring the victory that we were anticipating for his life. You see, from the very beginning, we spoke life over Connor. We planned for his LIFE, not his death!!! 

How was it possible that I found myself racing down hospital corridors hearing them yell, “He’s coding” or riding in ambulances…”lights and sirens”…the whole way, even a leer jet emergency flight from Eastern WA. Connor’s ICU room door was constantly revolving with nurses, doctors, specialists, residents, fellows, med students, chaplains, family! “Failure to thrive”, they said. “Complex and complicated”, they described. Yet all the while I shouted…”Miracle, he’s my Miracle”! Could they not see that MY BOY, was a MIRACLE?

Living life in the ICU felt like Groundhog’s Day. Same day…every day. Same trauma…every day. Same uncertainty…every day. Pleading for miracles…every day. Hoping beyond all hope…every day! Praying every minute for life to change, for healing to come…. every day! Connor’s first stay in the ICU was 111 days straight. Hours ran into days and days into weeks and weeks into months. Randy was flying in and out of the country at that time with his Military Air Force Squadron. The seasons had changed and I hadn’t even left the hospital to notice. I remember my Mom having to bring clothes from my house because it was now Spring. I hadn’t nursed my sweet boy in his adorable room…in fact, I hadn’t even seen my house in 4 months! How do days turn to weeks and then months? 

No sooner had we “graduated” from the ICU to a regular room, but we were rushed back to the ICU because Connor just wasn’t strong enough. So many complications that went unexplained. Another 87 days…87 long days of procedures, pokes, prods, operations, and restrictions. I couldn’t hold him but I could touch him…I could sing to him…I could softly trace circles on his forehead (which he still loves to this day!) and kiss the curve of his nose. I couldn’t nurse him…I couldn’t care for him like a new Momma wants to care for her baby. We were held captive to our circumstances of a journey we did not anticipate and one we certainly did not ask for!

Finally, after 10+ months of residing at Seattle Children’s Hospital, we went home. Back to Connor’s room; still prepared for a newborn, yet arriving home with a little boy, almost 1-year old. Nothing had changed…it felt timeless! But, we had changed! The trauma of our hospital experience was nothing short of life-changing. Connor’s life had changed my heart. It had changed my focus. It had beckoned me to tap into faith and strength I never knew I was capable of. Outside of God, I could never have walked this road. His strength had been made perfect in my weakness. He had allowed me to question, to cry, to doubt, to rejoice, to question again and cry some more! He had held me…he had held Connor. He has been, and currently is our ROCK, our CORNERSTONE! He is our gentle guide on a sojourn that we would have never surrendered to outside of His grace.

Our years of caring for Connor have come with equal parts of joy and pain, but never easy! We’ve partnered with great people to support us in the medical field, the school arena, as well as behavior management. We’ve been Connor’s advocate at every turn. We’ve fought for him and we’ve engaged our voice so that his needs are being understood. Our home has been filled with “staff” that, on beautiful occasions has felt like family and on challenging occasions has felt like we were held captive in our own home. A roller coaster ride of partnership for sure! It has affected each and every one of us!  

We’ve always known that it could never be “just us” caring for Connor. It just wasn’t humanly possible for that to occur. For those of you who have followed our story from the beginning, you’ve been our village, our grandstand of encouragers and supporters…our people!!! Thank you for praying when life has been critical. Thank you for rejoicing in our victories. Thank you for shouldering this journey with us! We need your love now, more than ever! These next days, weeks and months will, indeed, require a lot! Thank you in advance for sharing it with us and walking alongside us through deep waters. There will be beauty in doing this “hard thing” but understand that for now, it is simply a hard thing! 

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