My son has rituals. Mannerisns. Uniquities. If he gets excited he flaps, and flails. I call it ‘boxing fairies’ (there is an old Irish myth that babies see fairies, and we do not). Tonight it was my window to put him to bed. In the darkness he fluffed a pillowed, sternly grabbed my right arm pulling it under him, and grabbed the left to shnuggle him in tightly, like a baby burrito draped in 220lbs of security blanket. He hates sheets, pj’s, blankets, whisps of Egyptian cotton, but he loves his momma, and his poppa, and he sleeps a sleep in this nest of angry old man tonight that is deep and filled with dreams of bunnies and “choo choos.” He chugs some milk, cuddles, and shuttles himself off to sleep; this is his night time ritual.
Today the orthotics team was in to fit him for his braces to correct his “low tone” ankles. We can pick or create the pattern that he will wear for at least two years, pending HMO approval of the hardware. I wanted R2D2 feet, or maybe Frankenboots. The wife opted for anchors, as a symbol of summers in our disheveled little beach home where we thrive. Humbly serving as a Special Education Teacher in a public school system, time demands mean I barely see my adorable little family during the school year, and our stolen moments on a dune in a fly over state building sand castles is where our family happens. We go pick cherries, blueberries, sit on our deck during family made meals listening to pretty music and be. It’s quite nice.
Somewhere in his infant timeline our precious little boy hit some bumps. Seemed like every time he had any sort of medicine he would put us in a state of terror. Grey, lethargic, purging, seizures, days of IV fluids, concerned physicians, no food, no twinkle, it’s all something many parents have seen, but I wouldn’t wish on anyone. I learned suddenly in a rich and rigorous life what love, terror, and penance feel like and what character truly means as you stare down the barrel of that particular emotional depth.
And then came the regression. My light, my angel, my soon-to-be MIT alumni lost everything: his few little words, his eye contact, his interaction, his foods, everything but his giggles. It was deep. Infinite abyss deep. As a parent, you gaze upon your child for hours, forever, and all those little inchworm inches make the sleepless nights and shitty bosses and crappy days and storms and broken plumbing and sports team losses and high gas bills irrelevant, because it all counts for nothing when you get atomic cozy with a little soul that needs everything you have, and you give it willingly. You take him hiking, and to the zoo, and to the park, and to the library, and to dinner at grandma’s, and you change the diaper and play the record and watch the Elmo and any other things that were normative are completely different now, and you have to recalibrate.
So you go to the doctor, and that other doctor, and that team of doctors, and those other people, and their people. And they say jargonese like ASD, and PDD, and DD, and all it means is your precious beloved snowflake doesn’t get to go to the pre-school in your building like you dreamed of every day you walked past it, and “special needs” is a phrase you better get used to, and he may not talk, ever, he may not walk properly, ever, “potty training” is way on the back burner, you need a food coach, a speech coach, an occupational therapist, a nutritionist, a physical therapist, he needs braces, leg braces, you can’t have any vaccines as it may kill him but your friends blame you for outbreaks that don’t exist, and if you need a babysitter it better be one with a PhD, and yadda yadda yadda.
But, you always get back to the laughter. This is a person who has never not laughed, smiled or twinkled when around the people he loves. He identifies letters, numbers, and patterns in sequence. He solves problems (like the remote, or unlocking mommy’s phone, or using the dog bed to get to the chips in the cabinet) like nobody’s business. He can reset the locks, which you find out the hard way, he controls the dvd player accurately, and make the dogs come to his feet. He unscrambles letters into words, and then words into sentences. And he is only two years old.
And all you do is love him. You hold him down while they draw vial after vile of his blood, so they can run a broad bandwidth of tests that will only tell you to continue loving him and do what’s best. You sit up all night, like tonight, knowing he’s going in for a GI series even grizzled old men avoid, and that’s why you had to dilute his milk and give it to him early even though that’s not his ritual. And you hope not that it gives some diagnostic news, or glorious insight, but that it doesn’t too horribly delay an afternoon trip to the nearby zoo, because he really likes the Polar Bear, and maybe that will make his shitty day a little better.
My son is unique, and may never have a day like most people’s. But he is without a doubt the most beautiful thing I’ve ever seen, and his jubilant demeanor, despite quite a bit of duress, seems to bring joy and happiness to anyone who encounters him. I could not possibly have asked for a greater gift in life. The thing I have the hardest time navigating is when I hear people refer to him as disabled. I am fully aware of how steep his slope may be, and what supports, accommodations, modifications and interventions he will need. It’s what I do. If anyone in his path met him and negated the light of optimism, delight and cheer that Atticus shares with everyone in his day, my sadness wouldn’t be for my son, but for the disability those people must have in not being able to experience the joy that is the unencumbered human spirit. We are pragmatic in our journey, and sympathetic to those who have lost their ability to see the subtlety of a spring bloom.
This is the lesson my son has taught me, and I thank him for that every day.