But where I sit with my daughter is the third floor. The clinic portion of the rehab hospital, that on the days we are there, seem to be filled with kids of all ages. The little ones whose Mom’s have hallow eyes and a look of desperation in trying to wrap their heads around this disability thing. The seasoned parents who have older teenage/young adult children in complicated wheelchairs with feeding systems and communication pieces, who alternatively chat among themselves and suction their child. Almost without thinking, they are on remote pilot.
Then there are the parents like me. We have done this before. Our child is in a walker, or a wheelchair, pre-surgery or post-surgery, going in for botox or x-rays or follow-ups. I sign my daughter in, and head over to x-ray (where I secretly think to myself how likely my little girl is to glow in the dark at some point from all the exposure) and dutifully lie her down and hold her hand while they strap the vest on me.
Then in to see the surgeon or doctor, where I somehow speak their language and we move through the motions of range and spacticity and facilitated walking. Braces and botox and all the fun we have talked about for ten long years.
I used to be leery of bringing my other kids with to these appointments. You really do see a lot of people in a lot of very terrible bodies, and I was always worried it would scare them or they would stare. But now the thought doesn’t even cross my mind. They are used to this. This is their normal, just as it is mine, just as it is my daughter’s. They know now that people, and other children, in different bodies are still at their very core just people. They don’t gawk, they don’t even ask.
But as I marvel at how far we have come in our journey with disability, my heart aches for those new moms. I see my own tired and scared eyes in theirs. I want to sit next to them and tell them that they can do this, that it will be ok, that you will not always live with this overwhelming fear and grief.
It always sounds so trite and silly to say “our new normal” but in reality that is exactly what it is. Everyone’s family, no matter how perfect from the outside, has their own set of normal. And when you do get to the ten year mark with your child, you feel strong. You feel invincible and you feel like the problems and dramas of the mom’s around you are somehow so beneath you that you don’t even go to that place. It’s empowering in every sense of the word.