Life with a Superhero
Raising Michael Who Has Down Syndrome
Publication Year: 2013
Published by: University of North Texas Press
Title Page, Copyright
Chapter 1. Unwrapping
Michael came wrapped in layers, too many for a pleasant spring day. Even indoors, a small knitted cap was secured over his ears with yarn tied in a sloppy bow underneath his chin, brushing up against a matching sweater buttoned high on his neck. There was a small bead of sweat on his brow, but he seemed parched; ...
Chapter 2. Crawling
I’ve known for a long time that my family plays hard. There’s no changing that. Still, their exploits have been self-limiting. They have been slapped by the universe enough to figure out when to back off, when to call it a day, and when, maybe, to be a little afraid. ...
Chapter 3. Speaking
In our family therapeutic model, I carried on with my specialty— speech. As the primary parent at home, it made sense; I talked to and with my children all day. It was a natural fit. I just talked and read and sang with Michael a bit more. During our regular check-ins with speech therapists, we focused on what we could replicate at home. ...
Chapter 4. Running
Before it happened, the day was bucolic. I stood on the dewy September lawn in back of the synagogue drinking cream soda and eating a bagel shmeared with cream cheese. Michael, who was three years old, was sandwiched between Jim and me. Jim was in a neck brace, still recovering from an accident. ...
Chapter 5. Swimming
There is a certain look that can be passed from one mother to another; it is a singular look, and it is saved for specific moments. It is not a pleasant look. It is more like a sneer of contempt. A scoff. The upper lip slightly curls, and teeth are not quite bared—still, the possibility is real that fangs may appear—the eyes redden and then close into razor-sharp slits, ...
Chapter 6. Playing
The past few years, I have started to type a fan letter, but I always end up hitting delete, even before I print it out to see how it reads on paper, to see if maybe my words look less creepy on an 8 × 10 sheet graced by sunlight than under the starkness of office lights and the glare of my computer screen. ...
Chapter 7. Believing
Chapter 8. Learning
I wrote and hand delivered a letter to Michael’s elementary school principal after he brought home a project on Native Americans, complete with a Crayola picture of a chief in feathers and war paint, and a story scratched out in his emerging block print. The project was intended to provide a sample of his work, proof of progress or not, and a prompt for discussion at his upcoming Individual Education Plan (IEP). ...
Chapter 9. Imagining
I have a bone to pick with what the mighty and powerful at Walt Disney Studios have allowed, specifically the machinations of the darling pixies who toil away so diligently at their hugely successful offshoot, Pixar. You see, they complicated my parenting skills, especially with Michael. ...
Chapter 10. Flying
For a moment, suspended over an expanse of nothingness, their collective breath only a speckle in the span of totality, my family flew. Of course, I wasn’t with them; I am permanently grounded by my abdomen full of internal adhesions. So, when my family took to the skies without me on a clear summer day in Southern Colorado, it was meant to be a secret. ...
Chapter 11. Dancing
I know that it is not appropriate to repeatedly scream out in agony when one of my children is performing in a sold-out, standing-room-only, high-school talent show. It could easily be misinterpreted as rude. Or as child abuse. I know this. That, however, doesn’t mean I haven’t done something like that. ...
Chapter 12. Waiting
As Michael approached his fifteenth birthday, he became energized by the upcoming promise of gifts and cake and maybe a party. His birthday is in February. In November, on a Monday, during dinner time conversation, Michael asked Jim how long it was until his birthday. ...
Chapter 13. Wondering
On the evening of March 20, 2011, the stage in the Timberline Church auditorium was graced with human beings who carry with them a parade of diagnoses. There—the girl whose arm hung stiffly, in a permanent right angle at her side. There—the boy whose head stuck out far beyond his neck. ...
Chapter 14. Wrapping
Sometimes, from my upstairs bedroom, at any given time of day, I can still hear Michael talking to himself. I remember how I used to run downstairs and glue my ear to his closed door, worried that something was terribly wrong with this scenario. ...
Chapter 15. Progressing
About two years ago, if anyone had told us that Michael would soon be gainfully employed and working ten hours a week, with little to no supervision, Jim and I would have appeared decidedly doubtful. I would have bitten my lip and cast my eyes downward, the way I do when I am about to cry ...
Chapter 16. Thanking
I gladly offer my heartfelt thanks to the following people, without whom I would not have been able to complete this book: my adored husband, Jim Hulings, who has the patience of Job, and my beloved children and their significant others, Nathan, Sean, Joedy & Dave, Edie & Jeff, Michael & Casey—the nine of them are my life and my muses; ...