Dear Corbin,
I miss you. I hope it's warm where you are; I know you used to get cold in the hospital. I hope my grandma, though I never met her myself, is holding you right now. Please tell her I'm sorry she had to meet you this way.
I'm sorry you had to die so young. I had so many plans and dreams for you. I know that sounds selfish but I couldn't wait to bring you home and start our life together. When we heard you had heart problems I was devastated. It's not a feeling many people can relate to. The feeling you have when your dreams for your child are blown away. We were told with your heart problems you could never play football. That made us sad. Sad because we didn't want to tell you that you couldn't do it; we didn't want to tell you that you couldn't do anything. Our heart broke for you and the things that you were now limited to. We worried that you would feel left out from your brother and the things he could do. We worried that you might hurt yourself trying to mimick your brother.
Then when the Williams Syndrome diagnosis became real, we had new worries. We worried about your medical problems, the therapy you would need, the looks you would get, and the questions. So many questions.
It's hard to explain that feeling. That moment when you are standing over your child, waiting to help change his blanket and the doctor walks in. He's not the surgeon or even the head cardiologist. He asks if we have talked to the geneticist yet. I say no. He says "Oh, well he does have Williams Syndrome."
......."He does?"
That moment, right there, where you brain is processing what the doctor just said. In that split second there are millions of neurons firing, connecting, pulsing and sparking...only to get nowhere. I'm speechless. I don't know what to think or feel. You don't yet know the enormity of those words. You don't yet know how that one sentence will change your life forever.
Williams Syndrome.
One of my first thoughts was that it was my fault. "Oh God, what did I do?!" My mind races back through the past year, thinking of anything that could have affected my pregnancy. The birth control? The sleeping pills? The one half of a beer I had on July 4th? No, no, and no. They tell me it was nothing I did.
Which makes me feel better for a second, but the guilt crashes back. It's genetic, they tell me. Oh great, so it was my fault. It would have happened no matter what. It was in my genes; I passed it along.
And I'm sorry for that. I'm sorry this disease hit you so hard. After we learned more about Williams Syndrome (WS), we found a small but very strong and supportive group of mothers. They were able to give us more information and stories of their WS kids. It didn't seem so bad then. We could do this. It wouldn't be easy but you could thrive. You would need therapy and medications and maybe glasses. You might have eating problems, sensory issues, and it will take you longer to reach your milestones. You would always be on the small side, you would most likely have reflux, but you could live. You would also have a giant personality. You would be so friendly, and have an affinity for music. You would never meet a stranger and your blue eyes would have a starburst pattern. These we knew. And we accepted. We changed our mentality and our expectations to suit your new life. And we moved on.
There is no other option. We did what we had to do. If this is what is meant to happen, then we were ready.
Then you got worse.
Overnight, you crashed. You were doing so well, eating and breathing with low oxygen support. I was able to hold you, bathe you, and change your diaper. But that all changed. Your numbers bottomed. You had to be intubated. That awful vent down your throat to help you breath. I prayed that it didn't paralyze your vocal cords. Which now I remember, it may have. You never cried the same again. You were taken off formula and put on TPN. You were back on ICU status.
We were back to square one. But I still had hope. I still was optimistic that you could get past this. This was just a step back. They warned us this would happen, that we would take a few steps back but we would slowly make our way forward again.
Those steps forward never happened. You very, ever so slowly, began to look better but you were still on the vent and TPN. The TPN started to effect your liver. You started to get jaundice at three months old. Your hair fell out. Oh God. Your hair. It was so soft. I loved to brush it up into a mohawk. The nurses thought you looked so cute that way. Then it began to come out in clumps. The first time I noticed, my heart stopped. I was terrified. I didn't know what it meant. I had to concentrate on breathing while I looked for the nurse. I tried so hard not to cry. To me it meant you were getting worse. Although you looked better, your insides were getting worse.
I wish we would have waited. Just a couple more days. I regret that more then anything. I wish we would have put off your surgery just two more days so I could have spent more time with you. You were so beautiful. A chunky ten pounds, pink skin, and you were following us with your eyes. Oh baby...I'm so sorry. I second guess myself. Was the surgery THAT necessary? Did we really have to do it RIGHT then?
Who knows. I know why we did it that day. It was because you looked so much better. We didn't want to wait too long and you get worse. We wanted to do the surgery while we thought you could still handle it.
And you did. For a day, you handled it. I was told the first 48 hours would be the hardest. And you made it through the first night! I was so proud. I told the doctors I wasn't worried. He's gonna pull through. He's my fighter, my lion. I held your hand, smiling at you. I love you so much. Don't leave me.
But you did. It was too much and your heart stopped. I think about that day all. the. time. Was there someone in your room when your soul left your body? I'm sorry I wasn't there. I'm so sorry. The guilt is huge. Why wasn't I there!?!? Why couldn't I have gotten up a half hour earlier? Why did we take so long to get out of bed? I'm so sorry. God, I'm so sorry.
I wanted to tell them to stop. I knew you were gone. Your body was there, but you weren't. But I didn't want to be the one who said "stop." I didn't want that. So we told them to keep trying. It didn't hurt you. You weren't there anymore, you were in Heaven. You had already gotten your wings by the time we arrived at your room. If I had known that night was the last......I'm so sorry. I...can't explain the pain I feel from the regret.
They told me to hold your hand. To say goodbye. But you weren't there. I touched your hand, but it was so cold. So cold. I just cried and shook my head. No. No. No.
I'm so sorry.
Forgive me. Baby please forgive me. I love you so much and I'm so sorry. I'm so sorry....
