I am a special needs mom.
My child has special needs.
Maddox has three diagnoses.
Those three statements are some of the toughest I've swallowed the past few days. I've wallowed. I've cried. I've screamed in my car. I've vented on Facebook (the epitome of a meltdown right?) I've yelled at the unfair screwed up "system".
But what does this change? Not a dadgum thing. Each diagnosis the neurologist read to me was something I knew was coming. (Let's be clear: I called asking for them. I hoped with my whole being that this list of life long difficulties would somehow guarantee him some form of assistance when only it lead to more denials but that's another days worth of complaints...) but still, hearing her say it. Hearing her say words officially makes me feel things I've never felt.
Am I ready to list them? No. Grant me that. The main reason is because I googled after talking to her. Yes, I know better, but after studying childhood diseases and disorders (thank you Child Life degree) I knew enough to know I needed to know more. We've said from day one that cerebral palsy was a possibility so of course that's part. Well, googling only gives worst case and no one is going to look at my kid with a worst case perspective. No one (excuse the momma bear).
But look at him! There's things no one sees but us. Maddox's head is floppy, but he's picking it up from time to time. And, when he picks it up, he doesn't fall backwards! It used to flop every direction. Now? Just forward.
You see those fingers? This is a kid that used to never open his hands. Now? He can lay them flat on a surface when he touches it! He sees his hands finally and recognizes when he touches things.
Toes? Oh the toes... when his feet touch the ground they're flat. It's amazing. No more tip toes.
I could go on and on about things he can do that isn't noticeable to everyone but we don't have time for all that. Just know that tiny steps eventually add up.
Here's the deal. I can grasp a lot of things - he may walk, he may not. He may talk my ear off one day, he may not. He may eat McDonalds happy meals, or he may be tube fed forever. But at the end of the day, I don't care. I don't. Not even a little. I'm not being a pessimist. I'm not counting him out. There's a fine line of realistic optimism that I walk daily... No, every minute. I care what he's doing today. And today? He's sleeping through the night more days than not, we've been seizure free for almost a month, and he doesn't dislike his new chair. People don't understand how priorities change, how to do lists are different, how much you can crave things as simple as a smile for your kids, but I do. Does that make me superwoman? Heck no, it makes me a momma.
It makes me a momma just like everyone else. I'm nothing fancy. I read a blog once about how "special needs kids aren't lucky to have us as parents but we are lucky to have had them as kids." Good grief ain't that the truth. Two years ago I would've looked at me and said what some of my best girlfriends say about not knowing how we do it. But we all rise to challenges. And the best way to "rise" is by letting others help carry the load. (Our family is way better than yours, by the way. All our extendeds on both sides plus our friends are absolutely amazing)
Lastly in my rant of rants... I know not everyone would chose to share like we do, but it's who we are. Maddox is no secret. Maddox is the most quiet superstar I know. But I've never been one to live quietly and maybe that's why I got picked for him. I'll shout his triumphs, struggles, and even days of monotony, because I like to. I like to show off my babies. I like to openly ask for prayer. I like to attempt and give adequate praise to the Author of this story we are living.
I like to be an open screwed up book of imperfections.
See that big kid? He loves his Maddox Ray. And right now, to him, his brother is perfect and his "sweet boy" so my heart is full.
