May 29, 2013
My son lies quietly on his gurney, enmeshed in a cocoon of warmed blankets I’ve tucked around his feet. He’s been here for well over an hour, as the child slated for the MRI before his keeps waking up mid-test, so Justin has been forced to wait. Every five minutes or so he tries to swing his feet off the side to get down, and his father and I say a calm “no”, and he complies.
Finally the nurses come in to sedate him, and he relaxes into our embrace as the staff does their job. Within a minute he is out, and the kind nursing staff at CHOP whisks him off to the exam room as his father and I give each other a thumb’s up.
Waiting not being Justin’s forte, we are actually relieved they’ve taken him.
We’re here at CHOP today to conduct the first in a series of tests for our son, a series which will include very advanced blood work, and perhaps even a spinal tap. Justin’s father and I have traditionally been very conservative when it comes to tests and treatments for Justin, as historically they’ve never lead to much improvement in his symptoms, and I hate to put him through anything unnecessarily.
Our neuroped has never pushed us into anything which is part of the reason we’re even consenting to these ordeals, has in fact been patient as we’ve contemplated their possible efficacy for the better part of the year. When they were first proposed Justin was going through a terrible period of aggression, and frankly all we could concentrate on at that time was finding the right dosage for his medication, anything to alleviate the pinching, pushing and general miserable nature so unlike my firstborn.
My family is in a much better place now, and I am far more able to process the reasons for the tests, and the knowledge their administration might reveal to us. Among many other things, these exams will be looking at mitochondrial dysfunction, possible inflammation, viruses, and neurotransmitter function.
There is a very small chance they will discover something “wrong”. There is an even smaller chance we’ll be able to treat the issue. His father and I are at a point where we’re willing to put him through these exams to find out.
Despite the somewhat invasive nature of these trials (as well as the fact he’s missing a sacred day at school) I’m game, because I hope we can help him. His perseverative tendencies, the OCD-like behaviors in which he often engages but which rarely seem to bother him, have become a torment over the past few months.
The repetition of movement which in the past has actually seemed to calm him has now become his enemy, seemingly robbing him of his generally happy nature. Sometimes, when he can’t bring something to his idea of “order”, he just ceases, and cries.
I want it to stop.
My husband and I now have the luxury of a forty-five minute lunch together, so we gather our valuables and make our way downstairs to the hospital’s convenience store. I know that very soon we will make our way back to his room, where he will eventually wake up a little wild, but will self-soothe when he knows his parents are by his side.
I have a feeling he will come through with flying colors, will recover quickly from the effects of anesthesia as he did after his ear tubes were placed, that we will soon be on our way home. He will be calm, at peace.
He will be our good boy.
And for just this moment I allow the anger to wash over me, that we are here in a hospital on this beautiful spring day, that as I’m writing this my son is in repose in a loud cocoon, not at school with his peers. I’m angry for the disruption that autism often causes in his life, and in ours. I’m angry that he sometimes suffers.
I’m angry I can’t make it better.
My husband and I wait mere minutes before he’s wheeled in, still knocked out from the anesthetics, his face beatific in repose. He will sleep another hour at least as his father and I hover at his bedside, and I grab my husband’s hand and squeeze as we give each other our trademark gaze/half-grin.
It’s been ten years since this journey’s started, and some days it feels like a hundred. In truth, even though unfortunately we’re both really tired, we’ve only just begun. We have to harness our reserves to weather what will come- adolescence, adulthood, our eventual demise. There’s so much still left to go.
But in this moment there’s simply the three of us, just as we started on that chilly May morning over a decade past, when the sleeping child before us made us parents. We will do whatever we can for him, in part because he’s ours.
We will also do whatever we can because in truth, he’s just so damn wonderful.
I avert my eyes to my slightly stirring son and place my hand lightly on his chest, feel his strong heart beat in time with my breathing, see his body shift imperceptibly as he struggles to come back to us. He’s a fighter this one, always has been, always will be.
He will return to us soon, craving hugs, juice and snacks, as is his habit. We will slowly dress him, and he will love being escorted out in his fancy wheelchair. He will smile when he realizes he is going home.
And I will smile in response, and remember as I often do just how much I love this special, unique, and amazing child.