"Doctor, what's the worst case scenario for Dermot?" Joe asked as we were sitting in the epilepsy ward, January 2007. "worst case, your son will be wheelchair bound for the rest of his life", said the doctor.
I've been filling out a lot of paper work lately for Dermot. We've started with a new physical therapist and I'm attempting to apply for TEFRA thru the county. It's a supplemental healthcare that we'd pay a premium based on our income, then we'd receive the benefits that kids on Medical Assistance receive. It pays for things like home modifications, van modifications, durable medical equipment, and ton of other things.
The problem is that every form I fill out, every piece of equipment we purchase takes us another step away from normalcy. I'm usually okay with that, but today I'm sad about it. I've seen a lot of three year old's today. A typical three year old talks in complete sentences. A typical three year old is almost potty trained. A typical three year old wrestles with his older brother, splashes around in the pool, starts preschool, gets a big boy bed, feeds himself a messy cupcake, charms the pants off our dinner guests and runs into the counter and bonks his head, then gets up and says: I'm ok.
My three year old does not do any of those things. People will tell me to focus on the positive things, to appreciate the things he can do and be grateful for what God has given you and your family. Not today, today I am sad about it. I want so badly for Dermot to wake up tomorrow and say "good morning mama" and walk in to the kitchen and demand Honey Nut Cheerios for breakfast. I want Dermot to have friends and playdates and activities other than therapies and doctors appointments.
I'm the mom I thought I might be. The one that drives the van with the lift, parks in the handicapped parking stall and drops her kid off at school while the other mothers watch politely. I'm usually okay with it. The acceptance part of this is getting easier. But for some reason today I'm sad about it. Maybe it's because Dermot's birthday is coming up, that's probably it.