This is one of those posts in that category of not special needs, but special needs. Where I talk about how my life as a parent isn't what I thought it'd be. Where I find myself in offices I didn't think I'd ever be in, discussing problems I never knew existed outside the NICU.
It's more than just "why my kid?" Definitely far more than "why me?" It's like asking "why does digestion occur?" I'm not asking for a great philosophical explanation. I'm asking for the mechanics, the building blocks of stomach producing acid and the muscles contracting and the cells absorbing. I guess I'm asking "how" as much as "why."
Because it seems like there's always something. And while I knew when we received the FGFR2 mutation diagnosis, we could be spending time in offices I'd hoped to avoid, I didn't anticipate the broad range of issues we've encountered. I don't think I could have. Because it's not like all of these issues are linked to cranio. If they are, it's not documented in any research article I've ever read, and I've read a bunch.
And of course, I wonder if there's something I did. Did I not heat the lunch meat long enough? Was it that hot dog that gave me the stomach ache? Did I not control my sugars well enough? Was it the stress of that horrible summer? Why is this child the way she is? Why does she have to struggle? Why does her body just not function the way most bodies function?
I want a simple answer. I want a diagnosis. A gene. Something they can point to and say "this is the cause of all the problems, because they're all linked." And most importantly, I want them to say "and here is what the future looks like. Here are the other things that might happen and what we can do to help avoid or treat them." I want a blueprint. I want a syllabus. I want a map.
I don't do well at this fly by the seat of your pants thing. I like a flight plan. I like to know what's going to happen, when it's going to happen, and what I need to do to prepare. I hated surprise outings on weekends as a kid. "Where are we going?" "It's a surprise." "What do I need to wear?" "Clothes." "What kind of clothes, outdoors or indoors? Active or sedentary? Seeing lots of people? Dirty or clean? Do I need food? Should I bring a book? How long will we be gone?" "Just get ready." Argh. I hated those kind of trips.
Yet, that's exactly the trip I'm on. I'd like to imagine that the rest of my parenthood will be smooth sailing. But it won't be. I'd like to imagine that her muscles will strengthen, her hearing will be fine, her head will not change, her development will go away, and nothing new will come up. But after the last two years, I know that's about as likely as pigs flying. And it's frustrating. Because I want to prepare, to study, to ready myself for what's ahead. But that's not how life is. It's especially not how life is when your child isn't "normal." And who defines "normal" anyway?