18, I breathe very slow and deep as I type that number. I am in total disbelief that my beautiful boy is turning 18 in only 1 month.
How could it happen? As all moms know it’s difficult enough to watch your babies grow to be men and woman. Move on and forward. But sprinkle autism in the mix and well… the emotions are endless.
Jealousy. The first ugly emotion I feel. I am so disappointed in myself that it exists but it’s there clear and strong. How I envy the moms and dads worrying about late nights, driving, college parties and school acceptance letters. The heaviness in your heart makes it hard to breathe sometimes. But you do –and try to think of all the good things you have. And we do have good things; so you try to cling on to those and sweep Jealousy away.
Fear. That’s a great one. I’m afraid of so many things I couldn’t even figure which one to mention first. Money? There is never enough…we work, we struggle, we juggle we plan. Forget it. It’s not enough. –but yet somehow it is. It works; you just wish for once, it wasn’t such a struggle. If only you could just take money out of the whole freaking equation –how that would alleviate some of the ungodly pressure.
When I’m not worrying about money for Joey… I worry about safety. It’s constant. And now that he looks so much like man. Well.. it’s worse! He’s not that cute chubby cheeked kid that people are more willing to have patience and kindness with. He’s a man, all 6foot 2inches of him, with a beard no less. No one would think to watch when he crosses the street that he has no judgment he might run in front of your car. Or if he takes your soda at a restaurant you’re not gonna giggle. Instead you might call a cop. And … ooooh migoodness I can’t even go there –the fear of him being misunderstood by law enforcement. He has no words, he has no judgment. Ok, now I’m sweating.
I feel overwhelmed. I see the huge cliff because his education years are ending…and we are headed right for it with NO brakes. The programs that I have seen so far, well… they STINK. Either they are jobs like washing dishes or some basic college courses that would not provide an aid or modifications for Joey. So, what will he do all day? How will he feel successful?
I feel frustration. Have you ever tried to get information about SSI? I have gotten more conflicting information from the so call experts then I would like to admit. Don’t open an account; open an account so they have information for his check. Charge him rent, don’t charge him rent… go before his birthday, go after his birthday. This is just a few of the helpful hints I’ve been told. The more I investigate…the more confusing it gets. And it’s not like it’s important. It’s just his only income for the rest of his life. No stress here.
And… Guardianship? Wow…the emotional, powerful, detailed laden, paper work of guardianship. No parent should ever have to do this. The doctor reports that need to be notarized stating your child is PERMANENTLY disabled is enough to crush your heart and cause you to want to run and run without looking back. But you can’t instead you keep filling them out, one awful page at time. Pretending you can do this.
18. An innocent enough number. I never realized the meaning of it. Legal, make your own decisions –how we take it for granted.
But I do have a secret weapon, which takes all these painful lines of type away in a second.
It’s that smile. Joey’s pure, powerful, honest, lovely smile. He comes in my room every morning with the hope of a child. Strong and happy hoping maybe today he can have cookies for breakfast. I laugh and say no but we’ll figure out something. He joyfully accepts the change in menu and we start our day. Just another day. He doesn’t care he’s almost 18. –And there again he teaches me.
Why do I? For today…let’s just be happy it’s another day. Another day, where he has improved, learned to take care of his needs and enjoy his day. Where he smiles and kisses his mama and says her name too. Another day to learn something new and hope for more improvement tomorrow.
So, bring it on SSI and after graduation programs. I will figure out a great program for Joey –because he deserves a great program. And we’ll get through the stupid paperwork of guardianship. It’s just words it’s not my Joey. And SSI we’ll get that benefit too. He will have a few extra bucks for his needs; I’ll make sure of it.
Why? Because it’s just a number, it’s not what defines him. I’ll make sure of that too.
Every struggle has a reward. And Joey has rewarded us in so many ways. I am blessed and well, ready for 18!!!