I have been sitting through meetings these last few weeks to plan the transition of my daughter to middle school. All is going well, and everyone seems to be on board with the plan. But as I sit there at the big table, I fight back my fears and try to sit tall in my chair and keep my brain focused on everything being said. I am the gatekeeper, I feel as if I am ultimately the one who must protect her interests and be her voice.
I think one of my major issues is in the acceptance that my child is getting older. When you have a newborn, or a baby diagnosed with a disability you can always fall back on that old standby.
“Well, she’s still young. You never know what they will discover to “fix” my child.” She has so much time n front of her.
“They” are always doing research and gaining new insights, right? But in reality, how the hell do I know if this is true? If I’m being honest, I don’t have a clue if there is research being done on pediatric CP right now, or the disabilities and conditions related to it. I don’t really know where to look, and the business of raising my family, having a job, managing a kid with a physical disability and a marriage, have pretty much taken all of my time these last 11 years.
Don’t get me wrong. I have used my time wisely to search out loads of different kinds of therapy, and have tried every one of them from therapeutic to recreational. I have traveled through several states to visit a multitude of doctors. I have sought out and applied for grants for everything from camps, to ramps, to bikes, to accessible showers. Mountains of paperwork and millions of phone calls, and driving from therapy to therapy until my head spun.
And all of it 100% worth it.
But I haven’t actually looked into that amazing research that the ubiquitous “they” (whoever they are) have been doing.
It feels like I have come to a new place with this new transition to middle school, and then high school and then college and beyond. I have come to a place of saying “Hey, maybe this just is what it is.” There are no hidden answers or magic treatments I haven’t found. No huge changes I am going to wait for. No medical treatments that some genius in CP has almost developed that will save my child.
This is it. This is my child. She is special, she is brilliant, she has strengths and she has limitations.
She is what she is. And that’s ok. Now let’s move forward. It can be a bit of a scary new step in the journey, but there is nowhere to go but straight ahead.