“Our trauma may make us feel disconnected not only from society, but also from time, from the flow of our life.”
This quote is from Changed By a Child by Barbara Gill, a book of short, one-page essays written by a mom of a child with Down Syndrome. I bought it in one of my Amazon binges after Hope was born. It turned out to be a really significant book for me because on the pages of this book I found pretty much everything I was feeling, neatly and thoughtfully articulated in a way I simply could not approach at the time. It was good to be able to not only understand what was going on in my own head, but to know that what I was feeling was not unique.
It’s hard for me to think of the last five months of Hope’s existence in our lives as traumatic, I feel like she deserves so much better than that. I remember all of the fanfare and hoopla that surrounded Grace’s first few months and I feel bad that things have been so much more subdued and yes, sadly, very sad at times for Hope. But at the same time I also feel like it is equally important to be honest about what we’ve all been through, what I’ve been through — to honor the experience…that’s what Oprah would do.
I know that what we’ve experienced is hardly the worst thing ever, but it is shocking how even a little trauma can derail your life. For me it started pretty early. The first night Hope and I spent in the hospital I was holding her and getting into the hospital bed, still a little sore and numb from the delivery. She was swaddled in that baby-straight-jacket, quiet and asleep, and her head slipped off my arm. As her head flopped backward, her eyes popped open with a shocked look, then closed again. That was the first time I remember seeing her eyes, and for days it was the only glimpse of them I had — certainly the only one I could remember.
When it became apparent within a few days that something was not right with Hope, that moment gnawed at me. I was terrified to tell anyone what had happened, and didn’t until I told my mom that Sunday — at the very same time Tammy was at the hospital hearing about Prader-Willi for the first time.
That same night, when I got to the nursery the lab techs were trying in vain to get 3mls of blood from Hope’s heels one drop at a time. Later that night they tried and failed to get it out of her arms and hands. She was under five pounds at the time, she cried like a little bird as they dug around trying to find a vein. That was the worst night of my life.
Then there was the waiting for the DNA confirmation, two weeks, then three, then another blood draw. For four weeks we waited and wondered. She sure looked like the pictures of other Prader-Willi babies, but the doctor said there were other things they’d test for if the PWS test was negative.
The “other things” were far worse. Maybe it was that slip in the hospital, I did this. I remember sobbing because she had PWS, and because she didn’t. I loved her and feared her at the same time, she was mine but I wondered if it would be permanent — if I prayed it wasn’t PWS, if I was “ungrateful” for what I had — would God take it all away?
Would she live?
When the confirmation of Prader Willi came I was relieved, sufficiently numb by that time to not be devastated. I just wanted to be a mom but that was hard, we had so many doctors appointments, so many phone calls, referrals, evaluations…. I hit bottom, Tammy took the rest of the school year off.
Hope is five months old now, on her HGH, all the specialists have been seen, the snoring is gone, the reflux is better, PT and OT are underway, early intervention is in full swing, the oxygen tank left today.
Whatever road we’re on, wherever it’s going, it feels like its o.k. to put it on cruise for awhile.