November 14, 2010

What If

Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged , , , at 8:51 pm by autismmommytherapist

It’s before dawn as we make our way toward Jersey Shore hospital, a familiar route because it’s near both Justin’s neurologist and the site of Zachary’s penis surgery when he was an infant (yes, I said penis). Jeff and I are surreptitiously sipping cokes, trying hard not to let Justin see us entertaining our version of a caffeine habit because it’s his turn to have a minor procedure, and he can’t eat or drink anything until it’s done. After a six month stint in which my son managed to contract nine ear infections (most on Friday afternoons, post-pediatric hours, of course), we have taken him to an ENT, and practically begged for tubes. After his recent rash of illnesses and an exam that revealed the smallest ear canals in the history of children, ultimately the begging turned out to be completely unnecessary.

The wonderful, autism-friendly Dr. M told us after the conclusion of our first visit just to figure out a convenient day for us and make an appointment, which I promptly went home and did. After ten minutes stuck on hold while being regaled with the virtues of ear tube surgery (clearer speech, greater listening skills, a better night’s sleep) I admit I was tempted to go for the two-for-one special. Ultimately, I remained mature enough to make this about my son, and booked a day in the fall after our pool would be closed. The concept of an improved night’s sleep continues to remain tantalizing.

I know we’re going to arrive at the correct wing of the hospital a good half an hour early, but our choices were either to place him in the stroller and kill ninety minutes in the waiting room, or try to keep a ravenous seven-year-old child out of our refrigerator. I figured if he went through every new and old DVD we’d purchased for the occasion I could always wheel him around the hospital, as long as I could avoid the cafeteria. Besides, if he made too much of a ruckus they might just let him back to intake earlier, a place I remember from giving birth to be loaded with televisions, pillows, and those really wonderful warmed-up blankets. After a protracted waiting period in which I see no less than three news stories about “Cigar Man”, our nation’s newest version of the garden gnome, we are finally called back by a friendly nurse who tells us it’s our turn. We whisk Justin by the coffee, tea, and abandoned-looking donut section and ultimately reach our destination, where I am thrilled to see those fabulous blankets await us.

Post-baby purge, those soft warm squares and a nice drip of morphine are almost as good as a spa day.

We weave our way through a triad of professionals, nurses, admin assistants, and eventually the anesthesiologist, who asks us the most intensive questions of them all. I am forced to recall my son’s medical history as well as my own, a conversation which at this hour of the morning I deem completely unconstitutional. We run through the litany of potential allergies, asthma worries, and heart concerns, and finally our gentle sleep doctor asks me if there are any other issues he needs to know about. I respond with what I believe to be a kindly and ironic “Nope, just autism”, a statement which does not even elicit a sliver of eye contact from him.

Oh well, so much for my attempts at humor.

Within minutes of trying to slip my son into the hospital’s air-conditioned version of haute couture the head nurse returns to wheel him away, reassuring me that he can keep his DVD player with him. She reminds us that the entire procedure will be over in ten minutes, and that someone will come to collect Jeff and me and take us to recovery.

Oh, that loaded word. Can’t seem to escape it wherever I go.

I kiss him lightly on the lips and tell him to be a good boy, and he is pushed to the door while thoroughly engaged in “Up”, oblivious to the fact he has left his parents behind. Jeff begins gathering our paraphernalia, but I remain transfixed, watch the sliding doors mesh with each other as my son vanishes to ether, and slumber. I never allow myself this ambiguous luxury, but for this one moment I permit myself to wonder.

What if instead of a surgery to diminish illness, this was a procedure to eradicate Justin’s type of autism.

I doubt I will see this happen in my lifetime, nor more importantly in my son’s. Millions of dollars have been devoted to cancer research over the course of the last fifty years, and although great strides have been made, people still succumb every day. Heart disease remains the number one killer, and despite numerous remedies, colic still rules the world of many infants and their parents. If  we can’t yet conquer gas, I’m certain it will be many decades before we’ve seriously infiltrated the more serious manifestations of autism.

But just for a moment, I allow myself to wonder, to picture what our lives would have been like without this disorder.

What if there had been no frustration, no tantrums, no insidious, unpredictable rages.

What if his urge for repetition, that obsessive need for an order indiscernible to anyone else’s eye, were destroyed.

What if he had a true friend.

What if he could talk.

And I stop myself there as I always do, because after all these years, even in my mind, I still cannot hear his voice.

I mechanically begin to help Jeff forage for our stuff, abort my musings, and after a brief unplanned detour through the women’s changing room, which may be the most titillating event of my husband’s entire week, we resume our seats near the flatscreen. I have just enough time to tell my husband to watch tv so I can finish the last pages of my novel when the nurse is through the door, telling us he did beautifully, remains unconscious, but we are welcome to see him.

I hitch up our bags and cross the waiting area one last time, and stride into the hushed hum of recovery. Justin wakes up wild as I’d been told he and every other child does, but eventually, with our ministrations, he calms down. When I ask if we can take him home our assigned nurse asks us if he’s 80% back to normal, and hit with yet the second loaded word of the day, I simply smile and shake my head yes. Together we manage to strap him back into the stroller and return to our car, then slide him into his restraints. I climb in next to him, wedge myself in tightly between my oldest son and my youngest son’s car seat. He is whimpering but fairly complacent, and uncharacteristically still. He lets me take his hand, and permits my other to cup one of his ears while I press its mate against my shoulder. He actually turns his head slightly and raises it to kiss my cheek in one of his common gestures of gratitude, then settles back into my embrace. We remain this way throughout our journey, he, I’m certain, lost in the discomfort of his adventure, and me, lost in thought.

What if.

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16 Comments »

  1. Kathy M said,

    Oh, Kim… what if, indeed. My heart goes out to you and to Justin.

  2. Chad said,

    Hey–

    I am back after a brief hiatus. Read through several of these posts. This one is another of my faves!

  3. misifusa said,

    Wow Kim, love this one. I hope the tubes in his ears help a lot! xo

  4. Cindy said,

    Thank goodness for a successful, boring surgery and and a big hug for you and your bittersweet “what ifs”.

  5. Beautiful post Kim…so many things to wonder “what if?” about…I hope the tubes will help even more than you expect!

  6. jess said,

    sigh

  7. Shivon said,

    ‘Post-baby purge, those soft warm squares and a nice drip of morphine are almost as good as a spa day’
    love this….
    The ‘what-ifs’ are excruciaing


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