I have been putting this post off for weeks. I’ve told myself that I have writer’s block, that I’m too busy, that life, you guys.
Really, I am just hiding out. From myself and from you and from this blinking cursor who knows that I won’t write another thing until and unless this comes first.
Today, I am meeting an estates and trusts lawyer. In 33 minutes, I will put on some nicer shoes, hopefully remember some earrings, and get in my car to meet my parents at the office of their lawyer and discuss my son’s future.
Today, a man I have never met will ask me, “Do you think your son will be able to manage his assets when he reaches age 18?”
I will look at this man, a stranger until today, and say, “No. I don’t think so.”
I wonder if this man will know that I feel like I’ve stabbed myself in the heart with those out-loud words.
I can already hear my inbox dinging with messages. “No limits!” and “Don’t give up!” and “He’s just differently-abled!” I hear you, and I want you to know that it makes this worse. This has not been a quick or easy realization. There is a time to fight and a time to advocate, and there is a time to face every possible reality and plan for it. Today, I am planning for my son’s possible reality.
Here’s the truth. Yes, we have lived in special needs world for several years, but I honest-to-goodness thought it was temporary. I really did. I thought with enough work, enough therapy, enough motivation, in time, I could get Jax to that finish line that said “typical-ish.” I thought he might hover at that line, he might take a few steps forward, one step back, but that line was the goal, the only goal. I did not allow myself to consider the chance that he wouldn’t reach it.
After watching my son this year, and watching the gap between he and his peers grow, watching his struggles in school, watching his comfort zone shrink, I think we might be here to stay in special needs world. I think I better get rid of this movable camping chair and buy myself a Barcalounger.
I’m going to go tell a stranger to set up a trust for my son because he might never make it on his own. I will designate someone to manage the trust, and I will work my ass off to fund it. I will come home and I will hug my son fiercely and tightly and tell him that he is my favorite thing. I will send him off with the sitter so I can have an hour to myself.
Then I will be honest with myself, I will think about the magnitude of this, and I will let myself be absolutely terrified.