It is that most personal of expressions, that which both makes an entrance and leaves an impression. Aisles of products stretch outward from the hub of our local SuperWalmart; products like conditioner, shampoo, gel, mousse, piecing paste (whatever that is), hairbrushes, elastics, combs. Our own family illustrates the variability of hair. My husband has lost some of his; it ebbs backward from his forehead in the exact same pattern his father’s once did. My daughter’s is as fine as her mother’s, and just as challenging to style. She recently requested a blunt bob which is just one pouncing kitty short of YouTube cute. Jesse’s is fine, too, but with a gritty coarseness that might be its natural texture. It might also be the fine layer of dirt I can’t wash out.
Today, I buried my nose in Noah’s hair. Noah’s hair is thick and wiry, like the coat of a beaver. It is the kind of hair that will one day usher him into the ranks of the hair elite, those for whom male pattern baldness is unfamiliar territory. My father has this kind of hair – salt and pepper, sea-captain thick with a natural wave that he manages to make more awesome by the occasional running of his fingers through it. Though he is oblivious to it, other men hate him for this hair. This is understandable. At 63, hair like his shouldn’t be long enough to tie into a pony tail, it shouldn’t be wisping out under the brim of his ballcap in perfect grayish waves. It should be lying flat and frail under the weight of a wet comb over, shellacked with drug-store gel, or shaved off entirely to spare the wearer the indignity of trying to fake a head of hair when everyone knows he’s pretty much bald. Come to think of it, he has better hair than me. It’s disgusting, really.
We were sitting in the lobby of a Quest diagnostics lab this morning, Noah and I. As required by the blood draw guidelines, Noah had gone some 14 hours without eating, but that wasn’t the only thing making him woozy. Our neurologist, after reviewing our storied family health history (one that includes bi-polar disorder, apraxia, autism, ADHD, cancer, cancer, heart disease, cancer, cancer, diabetes, Behcet’s Disease and cancer), decided that genetic testing might prove beneficial. He’d barely gotten out the words before I was calling the lab to make an appointment, offering my son up like some sacrificial guinea pig. It seemed the thing to do. Our chromosomes are so dirty, they should come with an NC-17 rating.
The first lab had expired tubes – ones that were needed for some of the more exotic blood work. We headed to the next. The waiting room was overrun. We weren’t called for some time, and then after an hour, when a room finally opened, Noah was sitting in the draw chair shaking like a leaf, the hands pressed up against his closed eyes were a mottled purple. Because, after all, this is exactly what a kid with autism needs – to be told he’s going to get a needle and then to draw it out for as looooooooooong as possible. I bent down to kiss his head, and breathed deep of the dusty, “stuffed animal” smell his hair emits, that combination of little-boy, French-fry, sweaty clothes, ivory soap and roguery that I just adore. When I looked up, I saw a man of a certain age pass by, pompadour of hair coated in an unnatural, toneless black and sprayed into obedience. Behind him shuffled a wisp of a woman with a sweater around her shoulders, though the temperature outside was well into the 80’s. Her face was taut with the burden of steroids, but the rest of her was fragile and spindly as porcelain. Her hair was as toneless as her husband’s, but seemed unsteady on her head. I realized then it was a wig, and wondered for what cancer she’d been undergoing chemo. This would have been one of those “routine” blood draws to determine how much more toxicity her body could bear in an effort to destroy an unseen enemy. I wondered how much time she’d been told she had.
Two hours in a lab no longer seemed a long time to wait.
I looked down at Noah, bouncing his knees, asking me if I could pinch his arm and show him what the needle was going to feel like so he could be prepared. I thought of the metabolic disorders Dr. Rubenstein was digging for – Diabetes, Hemachromatosis, Wilson’s Disease. I gently pinched a little fold of skin in the crook of Noah’s arm. His eyes lit up, “That’s it?”
“Yep, pretty much. Do you want me to dance the Charleston?” I crossed my eyes at him.
He burst out laughing, which was exactly the point.
And before he knew it – 9 vials of blood, a phone call to the hospital and a few codes confirmed in a resource book later – it was over. I walked out into the pouring rain and put my arm around Noah, who held his bandaged arm out like it was a purple heart. I stuck my nose in that thick hair again, and thanked God for every one of our hairy days.
- Sarah
Contact: Sarah@chosenfamilies.org










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