It was just a little thing, this tiny ornament with “Baby’s First Christmas” in red lettering, and a photo of your infant head smiling out at me. This particular one had been buried for a few years but we found it this go-around with the Christmas tree, and of course we had to hang it. Your smile is pure joy, eyes locked on the camera; a moment frozen in time, making me reminisce.
I was always grateful to capture moments of joy in those days.
In those early years you were either really happy or desperately sad. I spent most of that time trying to ease whatever was distressing you- sensory issues, sleep issues, eating issues, just so you could find your joy.
A lot of the time it was a losing battle.
Back in those days I was convinced that since we’d diagnosed you so early I could help you get to the mild end of the spectrum. You were obviously bright, reading sight words at three, and I thought with all the hours of intervention we could slough off layers of autism, help you find happiness, have more choices in life.
Despite my best efforts and those of about a hundred practitioners, that didn’t happen.
I know in my mother’s heart I will never be totally at peace with this. It’s not for the reasons you might think, my son. Now I am able to mostly let go of all the things I’d thought you have and experience- college, driving, first love- simply because I know you are not longing for these things. Your world, at least, at home, is your DVDs, your movies on Disney+, your beloved computer. During Covid you have transitioned from a person who needed to go somewhere you deemed fun every day you were home to one content to transition from activity to activity in your own home. I believe you are satisfied with your life, not because you can tell me, but because you have always made it clear when you’ve been unhappy with your situation.
You may not be able to talk, but you can certainly communicate.
No, dear boy, the reason I can’t be totally at peace with your severe autism is that I have to leave you one day, despite what I know will be my best efforts to hang in there forever. It is daunting to think about that chunk of your life you will be on your own. I know you will have your brother and cousins who will do their best to keep you safe. I have faith in them, in their promises to look out for you and handle all the things your dad and I do for you now.
I have faith that you will continue to find your joy.
I have faith in the people you’re entrusted to after your dad and I are gone.
Over the years I’ve learned to shelve my fear so that I can live more in the moment, because I don’t want to miss any moments with you.
I don’t want to miss a moment of the joy I find with you.
I’m proud of you, and I love you, my son.
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