01 October, 2021

myBoy is 21 today

It feels right to talk about Jack in this space, where I’ve told too much, wept on stage, and shared his every incremental gain for so many years. 

I will admit, Jack’s birthday seems as much about me as it does about him. I grew him, named him Johnny Apple seed when he was just a sprout in me, and read every line of every book to prepare for his birth and life. And all that love he had shining on him before his eyes could even open. It was all we needed. Well, that and the Internet, and a village of people that cared deeply, and parents who supported us, and a marriage that bent but never broke, and another kid around to make myBoy and all his struggles seem easy. 

Jack is a lovely man. In his last IEP one therapist described him as kind and thoughtful, another used the word mischievous and said he was gentle with her. He is a man of few words, but he always gets his point across. The new therapist had no idea that this 6’1? 6’2 person walking with her, pausing when she wasn’t sure which direction to head, holding on to her hand lightly, has the strength and sometimes the will to twist away and run like someone with 4 seconds on the clock and twenty one yards to go. He can be fast, and decisive, and determined. But mostly, these days his life is set up so that his joys are taken into account, and he’s willing to accommodate your need to have him work on his goals. Don’t call him compliant, though perhaps that’s what it is. He doesn’t need to please you, that’s for sure. Neither of my children have any need to make you pleased.  

Jack shares space with us now, cozying-up to watch shows after dinner. It didn’t used to be easy to even sit on a couch with him. I think we asked too much, looking back—asking him to sit this way or that, and not sit the way his body can properly support him. When he was around 5 a teacher wanted him to sit "criss-cross apple sauce” on the floor during circle time. It was one of the first times I remember so vividly the biases we carry around and pretend that they are norms, or should-be’s. A lot of the world squats like Jack does, feet close together and flat on the ground, bum ½ inch from the floor. He can sit like that for hours. He can stabilize himself because his legs are strong and his trunk is weak. I said no in that meeting, and had to explain that the way he sits does not determine how much he can learn. I suggested instead that they help him learn how to sit down on a low bench or curb, or stair, because it was highly-likely he was going to be asked to sit still and get your damn shoes on, and those are places we would ask him to do that. Jack still sits in a sort of modified malasana pose, his knees together or apart depending on what he wants to do. When they talk about preparing him for future work, which the school system is required to do, I have never suggested yoga instructor, but as has been his M.O. for most of his life, he could teach us a thing or two. 

He has always been the kind of person that changes lives. Camp counselors decide that they want to dedicate their lives to the development of children, or never ever set foot on the facility again. Teachers think differently after he snickers at their adult commentary, even though he can’t write his name. His current home aide calls him an “ear hustler” always listening in on her conversations in English or in Spanish, gleaning what he can, chortling at our various predicaments. Just last weekend at his grandparents’ home he made sounds of approval and disdain from across the room, voting in a conversation where he had not been polled, but with accuracy so perfectly timed it was clear he had an opinion. He’s a conundrum that way, because then I get expectations that he understands every thing every time, and we just don’t know. So we go about life talking to him like he’s tracking all the things, then protecting him as if he doesn’t. I can’t imagine the patience he has to show with us. I heard his sister introduce him, “That’s my brother. He doesn’t talk, but he understands every single thing you say, so….” And she let it just hang there in the air, and Jack clapped his hands together and said, “ye-AHH” to let everyone know that she had accurately described the situation. 

He made me a mother. I didn’t know your heart could literally ache from being apart from someone, despite my longing to spend time with my husband, and hard breakups in college from men I still care about. What love was that, any of that that, compared to being separated from Jack for two days just weeks after he was born. When I broke my leg 28 days after his birth, I sat in a hospital bed in the dark, wondering if I might die from the separation from him. Something changed in me that night, and all of a sudden I understood all of the tropes, the wailing mothers on coffins, the whole archetype, and all of the dogma, all of it. He existed, and every cross stitch that read “Nothing is stronger than a mother’s love.” it was all true. 

Turning twenty one seems like a big milestone, but it’s not in the scheme of a young man who has never done what they say you will do during any particular time of your life. He walked at 5, but crawled at 7. He used his left hand to hold something when he was 8. He held his own cup at the Indian restaurant downtown when he was about 4 and my husband and I both got tears in our eyes. He ate entire chicken quesadillas at the the Royal Hawaiian when he was only 1 ½ and wasabi mashed potatoes at 2, and both times the chef just had to come out to see the baby that was eating up their delicious food.  He led his uncle’s hand to the door to tell him he wanted to go outside at 10 or 11-and he kept his gloves on so he could play in the snow that year. He started being able to get his arms through his shirt with only a little help at 13, and could lift one leg at a time out of his pant legs at 15. He let us know early on that he loved science and hated Dora the Explorer. And he will let you know he’s bored by tapping his fingers lightly on the table, just tippy-tapping, waiting for you to figure out your stuff and get back to him. He enjoys Monty Python, and Deadpool, and Star Wars, and the Marvel Universe, and he’s calmed by music, and a good story, and loves to be just on the edge of a great party, so clearly he’s ours, but he’s his own whole self too. He has friends at school I don’t know about, and eats hot sauce on everything when he’s there, sharing that love with his teacher. He likes nopales, and would be outside 24 hours a day if he could, rain or shine.  

He is hard work, and he is joy, and he makes me slow down, and he makes me impatient with a world that has so few accommodations for his needs. I worry about his future every day, and I celebrate every morning that he’s alive and I can kiss that strong tanned neck. He is loved, and he is funny, and I am forever grateful to know him, and so honored to call him myBoy. 

Happy birthday to Jack. Cheers to the wonderful young man you are, and all the things you love, and all the ways you let us love you. 

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