>Sometimes I forget Abbie has BWS. Over the last 2 years and the numerous appointments with doctors, specialists, experts and lab & ultrasound techs, you’d never think that I would forget, but actually most of the time, I do.
Because Abbie is Abbie. Plain and simple.
I set out telling everyone that BWS doesn’t define Abbie and it never has. It doesn’t mean that I am blind to her challenges. It means that she is my child. I won’t let her slide because of the BWS but also, I will do everything in my power to make sure she gets everything she needs to make this diagnosis more manageable in her everyday life.
Most days, I am just dealing with typical two-year-old behavior. I play the referee to the girls’ bickering. I have to reel her in because she doesn’t know fear. We read books. We play. I give her baths and make her meals and have the same everyday normal life that most moms do.
Then there are the days when it occurs to me that she’s tripping more.
The day during which I take my two children to Lexington-by myself-to Shriner’s Hospital, where her doctors tell me the limb length discrepancy has gotten worse. They tell me she needs a shoe lift and I take off her left tennis shoe and leave it for them to work with.
Weird how bringing home one shoe can affect you.
There was the day when I realized I had forgotten to get her AFP test done. The awful guilt that came with that realization came in waves over several days.
Of course, there are the days every six weeks we have the aforementioned AFP test done. And the days every 3 months when she has abdominal ultrasounds before which she cannot eat or drink anything after midnight AND she’s held down for it, which completely freaks her out.
And then there are days like tonight. Hubby came home with the name of a highly respected doctor who was recommended by a co-worker: http://www.lengthening.us . While I know that his intentions were excellent, my heart kind of sank.
Geez Louise, why this bums me out is beyond me. I think a big part of it is because I’ve read up. I know that it’s likely that she’ll need 2 types of surgeries to make her legs more even in length. The first would be when she’s about 8 or 9 and the doctors would go in and basically break the growth plates in her right leg. That’s the easy one. If we/they wanted to try for more (usually when you’re trying to even up 2 inches or more), there’s the type of surgery where the doctors would basically break her legs and attach apparatuses that would keep her bones from completely healing. Rather, we would turn screws/bolts and keep separating them until the desired length was achieved. That is the painful one.
And all I know is, I don’t want her to have to go through it. I pray and hope for a miracle. My heart always holds the hidden prayer that she will one day be completely whole in her body and not need all the poking, prodding and surgeries. This mother’s prayer has never been forgotten, but sometimes the reality of what is at this moment slaps me across the face. Hard.