Thomm Quackenbush, author

" Skate Like a Pirate | 2008 | Eviction "

09.30.08 10:04 p.m.

If you were to open up a baby's head - and I am not for a moment suggesting that you should - you would find nothing but an enormous drool gland. 

-Dave Barry

 


Craniosynostosis

I arrive at my mother's house. She is at her computer and she asks if I've heard about Aydan, my new nephew. He is only a few months old, born just weeks before our annual Lake George vacation in August, and I don't want there to be anything new with him. He is far too young to have mastered speech, crawling, or his bodily functions, which means new is something wrong.

She begins to explain the technical issues (he does not have a soft spot; his skull is fused shut) before she can find the name for his condition, craniosynostosis, on the internet. It is only then that I notice the dark circles under her eyes from crying all day in fear of her grandson's health. I've taken more than enough child development courses to know how rapidly an infant's brain inflates in these first few months, how the fontanel exists to accommodate the head exiting the birth canal and then growing like rising bread dough. He has no room in which to develop right now, so his head has taken the shape of a football, a feature I joked about when I first saw him in the hospital, when my sister-in-law Becky complained this was her more painful birth yet. Without remedy, he will have severe impairments, up to and including blindness and mental retardation.

The doctors are going to give Aydan a CAT scan and then wait. If he has a seizure, his condition will be considered an emergency and he will be immediately repaired by removing a section of his skull so that his head may grow properly, allowing his brain too literally room to breathe. Otherwise, they will leave him as he is for these most crucial months, a sacrifice to the god HMO and their belief that they have the luxury of time.

I immediately tell my mother that I am almost certain Aydan had a seizure, hoping that the doctors won't be able to contradict me until Aydan is already on the operating table. And he certainly could have had a seizure and had it be unnoticed. Babies are twitchy things. It isn't as though he could describe his eyes rolling back and being unable to control his body in the midst of a nap. He already soils himself as a matter of course. Let's get him the surgery now, please.

The name "craniosynostosis" sounds so much like a contrived magic word, some curse to make your nemesis's head transform. Is this what Puck inflicted on Bottom in A Mid-Summer Night's Dream? I research the condition and find it afflicts 1 in 2000 babies, which does not make it especially rare. Common things are much easier to fix. I have only met two children with roughly football shaped heads in my years of subbing and working with learning disabled kids. They weren't especially bright, but they were functional and nice enough. Of course, I want my nephew to be described in far more glowing terms than "functional and nice enough". He has similar genes to me and will be the only lasting heir to our horrible last name, he needs to be stunning and brilliant to compensate.

I regret that I haven't had a chance to bond with him yet. He was there on vacation, but my most pressing memory is honestly confusing his crying with a car alarm. Until children are old enough to acknowledge me in return (a quality his older sister Alyssah only acquired a few months ago), infants seem like especially loud and smelly pets. Even cats capture more of my interest than very young babies, though babies are above tropical fish (which are themselves a step up from houseplants). Aydan is this mushy red thing frequently attached to my brother and his wife. They love him - as they should - but I don't know who he is yet and I discover how desperately I want to hear him call me "uncle".

I don't want my family to have to start mentally preparing themselves for the possibility that he will be developmentally delayed. I have a cousin, Lisa, who is mentally and physically retarded owing to her mother having German measles while pregnant. The doctors promised my aunt that Lisa would be fine. Lisa is older now, possibly in her late thirties to forties. Like so many mentally retarded adults, she has something of an ageless quality in my mind. Her hair may be graying, but her mind is the same as when I was a child. She has always been there, happy and lovable. My cousins and I adore her and joke with her at family functions. But she will always live with my aunt and will never have anything approaching a normal life. As far as I know, she doesn't quite know what a normal life would entail. I love her, but I don't want someone to be writing this about Aydan in thirty years because the doctors were wrong.

In all likelihood, should the doctors decide to act before his brain is stunted, he will be beautifully normal, with the same chances afforded to anyone. I've worked with those who have been damaged by medical apathy or hubris and I have nothing but compassion for them. I've truly loved getting to know some of the children with learning differences and disabilities, but I don't want it for someone sharing my bloodline. If there is anything that can be done that will prevent Aydan from having a disability, cognitive or otherwise, I want it done as quickly and precisely as possible, before he has a chance to form memories of the trauma of surgery.

Even if they can get him the surgery with appropriate haste, I doubt my brother's insurance covers much of it. This is already a defining moment in his life in all the wrong ways, the sort of struggles that make great melodrama and lousy reality. I don't really know how my brother is reacting to all of this. He increases the amount of email forwards he sends out, borderline racist jokes and chain letters, but acts aloof when I call him until I ask after Becky. "Becky is really broken up about all this. It's really bothering her," he says, and I catch the edge of his own sadness. I start sniffling because I had a rough day at work, but I can't begin to imagine the kind of tears this fear would provoke in Dan. He has got years of uncertainty ahead of him, he can't give this voice yet.

I feel like a cliché, searching for purpose in all this, trying to divine a reason in a tragedy because I am of a pattern seeking species. I am not looking to blame, just the capability to step back and see a bigger picture. But, aside from some silent god that combined just the right chromosomes or allowed some minute pathogen into Becky's womb at just the right moment, I can find no cause for this. Some people get diseases because they do foolish things or go foolish places, but a baby is innocent in this world. There is no original sin that can touch a baby's first smile. I feel impotent to acknowledge that this may just be one of those things that happen from time to time, a roll of genetic dice that had my nephew born not quite right. He has been dealt this lousy hand, having only been on this Earth a few months, and I have to hope that the doctors aren't bluffing.

Soon in Xenology: Eviction.

last watched: This is Spinal Tap
reading: Spook
listening: Highly Evolved

" Skate Like a Pirate | 2008 | Eviction "

Thomm Quackenbush is an author and teacher in the Hudson Valley. Double Dragon publishes four novels in his Night's Dream series (We Shadows, Danse Macabre, and Artificial Gods, and Flies to Wanton Boys). He has sold jewelry in Victorian England, confused children as a mad scientist, filed away more books than anyone has ever read, and tried to inspire the learning disabled and gifted. He is capable of crossing one eye, raising one eyebrow, and once accidentally groped a ghost. When not writing, he can be found biking, hiking the Adirondacks, grazing on snacks at art openings, and keeping a straight face when listening to people tell him they are in touch with 164 species of interstellar beings. He likes when you comment.



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Works by Thomm Quackenbush

Anthologies

Find What You Love and Let It Kill You by Thomm Quackenbush
Pagan Standard Times: Essays on the Craft by Thomm Quackenbush
A Creature Was Stirring: A Twisted Christmas Anthology by Thomm Quackenbush
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