Yesterday, your lawyer went to a courtroom and convinced a judge that it would be in your own best interest to have your parents be your guardians and caretakers until we no longer can.
Apparently, it all went without a hitch, and for that I am grateful.
I have to admit, this transition to adulthood has been more difficult than I anticipated. Maybe it’s the enormity of knowing I’m still raising an adult who’s severely disabled. Perhaps it’s the questions on the forms, all of which proclaim you unable to do so much.
There are no questions on those forms requiring answers regarding how your smile lights up a room, and how you give the best hugs.
I think your father and I spend a lot of time in the here and now, which is not a bad thing. This paperwork forces us to look to the future. Some of it is good, some of it I will never make my peace with.
I’m still working on how you can live a normal lifespan, yet I outlive you.
There’s so much still coming down the road as well. Your second big transition time will come in two years, as we navigate the years after your beloved schooling ends, finding a day program for you, an agency to coordinate it all, and if we can pull it off, a fabulous place for you to live.
I just want you to know I will be working tirelessly so you can live your best life.
I look at you at the amazing age of eighteen, and I see a man who struggled mightily over the years to conquer all the impediments to your happiness. There were sensory issues, sleep issues, eating issues, and behavioral issues as well. What kept me going in even the darkest times was my gut instinct that inside of you was a boy who wanted to be happy, who wished to let his affectionate nature dominate your waking hours. I knew, with time, you could have a good life.
And as I gazed at you yesterday on the beach and watched your smile spread across your face as you discovered a favorite toy in your bag, I knew we’d won.
I will always fight for you. I will always love you.
You have my heart, my happy boy.
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