In the final leg of a long yet successful trip to seek medical care for our older son, we had all settled in for the last hour of travel. The sun was dropping in the sky, casting a warm glow upon the horizon.
We made it. That's what I was thinking. I heaved a sigh of relief and became lost in my thoughts of everything and nothing all at once. That was when I heard it, not quite a grunt and not yet the gurgling that would soon overwhelm him. It was a noise that ripped me from the comfort of my abstract thoughts and made me turn my attention to our older son in the back seat.
He was seizing.
In the bucket seat beside him was my husband, and seated directly in back with Big Brother practically in his lap was Little Brother. Poor, poor Little Brother.
I told my husband what was happening, pulled the van to the side of the road and jumped behind me to the middle row of the van. The fit was tight and inconvenient, so very inconvenient for a family to be tending to one of its own in a moment of crisis.
As I watched his body twitch, I looked at the impossible situation before me and tried to troubleshoot.
Seat belt on? It kept him from flopping in closed quarters and harming himself. We were absolutely packed to the limit. Or, should I go with the seat belt off so I could move him into a better position?
I couldn't recline the seat entirely--the car was packed too tightly. What to do? How do I keep him from choking on absolutely...all...that...fluid?
No position was ideal. It was the first seizure where I couldn't position him where he needed to be. I was working in uncharted territory, testing wings that were far too young to fly alone.
In the end, I held my son. I held him as he twitched and clenched and foamed at the mouth. I watched his eyes roll into the back of his head. There. On the Interstate. There. On the side of the road as cars rushed by, as people went about their lives.
There. Right then and there as our son suffered not the first, but the most severe seizure of his life, our lives were experiencing a new beginning. Together with him, once more, our lives were entering another stage.
When the major effects seemed to subside, I left him to my husband and got out of the van in order to break open the back hatch. Our son had lost control of his bladder, which can be very common. His clothes, the seat and everything that came in contact with him at the time was covered in urine.
There was no dainty way to do this search. With little humility, I pulled our bags out onto the grass at the side of the road and scavenged for spare pants, underwear, towels and anything that could help with the effects of his elimination. I looked for things to put urine-soaked items in for the last hour of our trip.
He didn't bite his tongue, did he?
In the blink of an eye, one door can close and you find that you have unknowingly passed through another. There. On the side of the Interstate, as I tossed our bags onto the dirty ground, I briefly paused. A new chapter was unfolding in the already lengthy book about our son's journey with special needs. There. As cars whizzed by me, so, too, did his tumultuous life.
The screaming infant.
The unresponsive toddler.
The grade schooler who spent a work-week in therapy.
Until I found myself there, a middle-aged mother of that special needs pre-teen, going through our bags at the side of the road in order to meet another crisis that to the outside world surely seemed unfathomable.
I found in our bags towels and warm, dry clothes for our tired son and wrapped him in comfort so that he could rest his weary body as we limped our way back to our house. And in the week to follow, as his body adjusted to the physical trauma it had endured, my mind adjusted to the emotional trauma that inevitably results from a mother not being able to help her child in need and also from not being able to shield her other child from looking on in horror as his sibling loses control of his body.
Our family was facing a change.
Amidst the chaotic haze of calls to doctors and tending to needs and wiping away tears (some of them mine own), I still felt a duty to parent, to keep the pace with every day activities of life, to re-establish a sense of normalcy.
"What is your earliest memory?" I asked our younger son one day as I sat beside him on the couch in our family room.
"You mean when I was a baby?" he asked.
"Yes," I said.
"Well, I remember standing at this counter in the kitchen on my birthday. I think I was about...um...three? And you let me stick my hand in cement to make a permanent print of my hand."
The earliest memories of his life. My brachial plexus injury child, born with a paralyzed arm. The child who wore a threshold electric stimulation unit to bed every night of his life for four years; the boy that had braces under his clothes with names like "super suit".
My child who flew across the country before he was five for surgery in Texas did not mention any of those things as his first memory. He mentioned his birthday and a tradition we had of capturing his hand print in plaster.
There was a time when I thought, surely, his physical disability would overshadow his childhood. Yet, somehow, it didn't even factor into his memories.
This new stage with our older son is no less traumatic than any other stage our little family has endured. It's just...new.
We've got this.
This entry was written in response to a writing prompt issued by the Group Blogging Experience 2 (GBE2). #seizuredisorder#epilepsy#autism#