Sunday, July 5, 2009

Worst Case Scenario

"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.


Fawn said...

Hey Suzanne, we all have days like that. It's okay to be sad -- because it really isn't fair, and that stinks. Sending you big hugs.

Kate J in MN said...

I've had a few moments lately, too. At my son's 1st Comm., all the little girls in white dresses came around the corner by my pew, and suddenly tears just poured forth - just another thing Jn will never do. And at her older cousins' weddings - other "typical" 5 or 6 year olds being the flower girls - Jn just doesn't look nice enough or have the coordination to be in the perfectly planned weddings... and the guests aren't too thrilled to get drooled on either, when the little sweetie wants to give them a hug. Sometimes you just feel assaulted by everyday life, even when you are doing your very best to hold it together. God bless you, Sue. Here's to brighter days...

Liz said...

Being sad and embracing that feeling sometimes makes me feel better later. I hope it did for you too. You have been through a lot and always impress me with your positive attitude. There is no reason you have to always be upbeat. It's probably healthier to go through those ups and downs. It's normal. I love to see you and the boys. All your kids are wonderful and great examples for other kids. I'm glad we had our first play date this week. Max is going to have so much fun with the kids when he can actually interact with them. For what it's worth, Dermot seemed to me to have made huge strides in his development since the last time I saw him. What a cutie he is.