Special Needs Action Hero

This month a trip to the hospital with my son for a routine procedure had me exchanging the following words with a nurse:

Nurse: “You shouldn’t have given him juice this morning. The instructions explicitly said no food or drink after ten a.m. I’m going to bring you an eighteen French catheter and a Q-tip and we’ll need to drain his stomach. Can you do it?”

Me: “Sure! I’m up for anything.”

Not that I had ever drained my son’s stomach with a catheter and a Q-tip before. Even so, as a friend of mine once pointed out to me, “you’re like an action hero in the world of special needs.” And so I tossed my superhero cape over my shoulders, picked up my tools and went to work. Soon enough, I’d drained the juice and satisfied the nurse’s requirement that Evan’s stomach contents be completely empty. Another victory for Special Needs Mama!

It’s true. I have learned over the years how to: wield a variety of medical equipment; set experts straight on my son; tell therapists what to write in their reports; inform medical professionals on everything from “pulmonary valve stenoses in former very low birthweight infants” to “non-FDA approved anti-epileptics for the treatment of West Syndrome.” That would be me offering the explanations, advocacy, and defense.

Like any action hero, however, when the costume comes off and I emerge from the phone booth wearing just my civilian clothes, I’m imperfect, indecisive, and often downright wimpy. The friend who called me a special needs action hero was shocked to hear, for example, that I can take months to quit a therapy I see is not working for my son, that I struggle with the words to use to end a treatment or leave a doctor, or, finally, that I stay up late at night worrying about my decisions. A change in school placement or routine, tubes in his ears or not, antibiotics or not. These can all exact their toll. I may be able to drain a G-tube with a catheter and a Q-tip, but I also worry and fret with the best of them.

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In my early days of motherhood, when there was just my perfect, normal older daughter, my husband observed, “Mothers think they’re omnipotent, that they ought to be able to do everything, all the time.” The words came as warning: “Let yourself off the hook,” and “You won’t have all the answers even if you think you should.” Even so, I had tasted omnipotence (recognizing my daughter’s infant cries as hunger or not, thirst or not) and simply stowed the advice away for future reference. Toddlerhood and tantrums? Piece of cake. Perhaps later on, in my perfect daughter’s teenage years for example, I’d feel confused, or have difficulty navigating the waters.

My son’s birth not only put those instincts into harsh perspective (where were the instincts for a baby born weighing only a pound, whom the doctors treated as their charge, and not belonging to a mother?, it also raised the stakes astronomically. Okay, then: show me how to intubate. Teach me what the machines mean. And, as the years went on, let me learn about sensory integration disorder, teach me Braille, instruct me in special education law, the rights of the disabled. Show me, as a writer, how to write about this and teach others too.

And so the origin of Special Needs Action Hero, born not from Krypton, but simply from the hallways of hospitals, waiting rooms, doctor’s offices and therapy sessions. A surprising result of that early, premature birth, but one that now feels destined and presaged indeed.

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Somewhere along the way I did come to believe in my own omnipotence, and I guess I convinced others too. Hence my friend’s description of my abilities, and the image I project. And yet in private, along the way, at nearly every juncture, I have also broken down and experienced immobilizing doubt and a profound sense of my own limitations and imperfections. Were those honestly seizures I saw in Evan on Mother’s Day, just a few short months after he’d come home? How was it possible? Should I believe the ophthalmologist who felt the drug for the seizures might destroy what little vestige of sight my son might still have? Was it true, as a professional once predicted, that due to those same seizures and his extremely premature birth my son would never talk? With a child like Evan, the same high stakes that created an action hero also put me as a mother face-to-face with all I would never know: did the therapies work? Were they worth it? Would anything make a difference? If I skipped a dose of medication thanks to forgetfulness or exhaustion, did that warrant a call to the doctor? That same moment in the hospital with the nurse put all my abilities — and limitations — into stark perspective. I was being asked to perform a task that ninety-nine percent of mothers would never know how to do (drain their child’s stomach contents with a catheter and a Q-tip) and I was expected to do it. Action Hero or Wimp? I opted for the Action Hero role but as I did it, the inhaled breaths of those around me, not one but three nurses, told me that wimping out — or, rather, accepting help — would have been a perfectly reasonable option as well.

If motherhood imparts traces of omnipotence, even the rhetoric of special needs motherhood raises the bar. Often we are called “superhuman” or “saints.” The “I don’t know how you do it” that special needs mamas hear implies that we must have some other-worldly qualities to help us make it through the day. The notion that we doubt ourselves, keenly feel our limitations, or labor over our decisions simply doesn’t line up with the power necessary to meet the challenge of our daily tasks.

I guess it’s no accident that even I have come to believe in my own hype, or that my friend bought into it to by labeling me a Special Needs Action Hero. Some day soon, I might have my own Wikipedia page or an actual comic book to go along with the medications, therapies, G-tube, catheters, Q-tips, and all. Until then, I’ll confess, here and anywhere else, I’m just an ordinary human being, and for that person, the person I really am, the costume is awkward and ill-fitting, and doesn’t really suit.