Tuesday, April 29, 2014

It's Not A Celebration. Not Yet Anyway

Well to those of you who have been supporting me along the way and for all of the rest of you too, I just wanted to let you know that yesterday Thomas and I went to a disability advocate and filled out all of the forms to get Thomas SSI. I finally did it but somehow I am just not excited about it.

To begin with, Thomas had to go through an interview process that covered his history and current state of mind. I found myself again in a sort of twilight zone as I sat there and listened to him describe himself. Every question that was answered made it more and more apparent that he is a very sick young man. As his mom, these sorts of interviews are very hard for me to sit through. I usually hold my breath and I can't bring myself to look at the interviewer for fear her expression will give away her true feelings about what she's hearing. C'mon now. I sit in that room and listen to that stuff and I, if I didn't know Thomas, would think he was utterly crazy and no doubt that would show on my face. So I didn't look at the interviewer. My eyes remained on Thomas as I tried to support him through what he was saying. He was hesitant at first but I told him that if ever there was a time where he needed to tell the truth about what goes on in his mind, this would be that time. So he talked. A lot. After that there was no doubt that we were doing the right thing by coming to this advocate and getting the ball rolling on Thomas getting SSI.

Here's the thing though. I've said this before but today I'll say it again. As his mom, who saw a different future for her boy, it is very hard to come to the point that you realize that the U.S. Government is going to decide that your son has a lifelong disability and that they believe he will never work a full time job (hence the supplemental income and "food stamps") and that he will need medical care and help with paying for meds, for THE REST OF HIS LIFE. Don't get me wrong, I know the money is a good thing. I know that if I die, there will be money to help support him. I know that this may give him independence in a small way. I know all of that.

What it also does though is wrench my dreams for him from my grasp. Yet again, in that interview process, I was reminded how sick he is. The signing of all of the paperwork to get SSI shows how sick he is and all I can think about as this went on and then in the hours since is that the things he wanted for himself and I wanted for him are gone. They're really gone.

He wanted to join the Navy and work on submarines. His dad and I were going to send him off to boot camp and that was going to straighten him out a little bit and get him on the right path. He was going to have a steady income, medical insurance and a girlfriend and maybe someday a wife and kids. He would travel the world, make tons of friends and would serve his country a very proud young man.

Or he was going to go to college and study psychology. He would graduate high school and go straight in to college in the fall and would begin adult life an educated, prepared for the workforce, young man. In college he would make lots of friends, go to parties, drink too much one night an end up vomiting in the bushes never ever again to have another drink because of that experience. His brain was going to be filled with so much knowledge and he was going to emerge graduation day with enough schooling to get himself a decent job and begin a life that would include lots of experience, the ability to support a family and so much more.

Instead, the Navy recruiter told us that they wouldn't take Thomas as a recruit because of his diagnosis of schizophrenia. Poof! Dream wrenched from our grasp. He will perhaps go to college but instead of the quintessential college experience, he would go to classes, study things that reinforce his delusions, and he'd isolate himself from other people not to mention that the stress from school or work or the Navy could cause an episode and he'd be hospitalized. That is his reality. That is my reality and applying for disability, for deeming him "permanently disabled" just doesn't feel like a good thing to me right now. There will be money and health insurance but none of it, none of it will ever ever change that Thomas has schizophrenia and in a lot of ways because of that diagnosis, his path is laid out before him in many ways, a path lined with monsters and CIA agents and whatever else schizophrenia is going to throw his direction.

We applied for disability and were told he will get it because of the nature of his illness but it's not a celebration, not yet anyway. For me, as his mom, today I mourn the loss of my boy and the dreams he had laid out before him just 3 years ago. Today I learn how to find a way to let that all go and to find a new reality.

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