Monday, November 5, 2012

#GBE2: Beginnings

Driving down the open road, I was in the captain's seat of our family van last week, my husband and two sons seated in the back.

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 And you let me stick my hand in cement to make a permanent print of my hand."

I smiled.


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


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#


  1. I wish I had more to offer you and yours than my prayers, Amy, but I can't think of a thing. I do always hold you close in my thoughts and hope each day that your sweet boys are experiencing moments of happiness and wonder that they'll hold dear.

    1. Thank you, and please know that we are OKAY!

      He's had them before, but I'll admit that the one in the van rattled me. It was a doozie, and it was right after our trip to his neurologist where frank conversations happened. It took a week to process. We've had lots of diagnoses given in this house. I'm not so sure they've held us down yet?

      Thanks for your your support Beth! I wanted to write about it for other families out there like mine. Seizures are common with autism, as I'm sure you know.

  2. I rest assured that you do, in fact, have it. Whatever comes unexpectedly or even on the radar, you will have it. A family united for the care and development of all, that's how I see you, R and the boys.
    I can't even imagine being in that van, I can't even imagine W's mind at that moment and I am so glad T has you and R to see to his needs and somehow instinctively doing the right thing.
    You're just phenomenal. All of you.

    And I'm so happy you're blogging again!

    1. Thank you, Jo!

      Maybe these fancy blogging programs on my old laptop will get this blog up and going once more? I hope.

      I loved Will's earliest memory. It made me feel as though we're doing something right in our parenting. As the special needs fires blaze around us, it is a challenge to keep the normal activities. But we work really hard. You've seen it--the carousels, the birthday parties, the trips to Halloween hayrides, etc. I hope those are the things they remember more...more than the seizures and the surgeries.

  3. How overwhelmingly scary!! It amazes me how you weather every storm thrown your way and do what you must. I can't even begin to imagine, just happy to hear that you all survived it and lived to tell the tale.


    1. At the time, I wasn't scared. I think you'd find, Kathy, that you kick into mother-mode. But it did hit me after. This particular one shook me, and for a few days after, I was sure when he looked at me a certain way or if his fingers started to shake that he was about to have another. It's all just normal processing. Hopefully we'll get him therapeutic on his medication soon and this will all be under control.

      Thank you for always reading and commenting!

  4. I've heard it said that God hand picks the parents to whom he will give the special children. You prove every day just how true that is. I believe your whole family was put together by plan to be an example to so many other parents who are struggling to provide the right care to the special children they have been blessed with. Please know that so many of us love and support you with prayers and encouragement.

    1. Thanks, Kat And thank you for all that you do to support the boys. I really appreciate it!

  5. Amy, I am constantly in awe of your posts, and of your amazing outlook on everything. I'm quite sure that that's where W gets it from and why his earliest memory is such a positive one. And you're so are definitely OKAY!!!

  6. Hi, Tasha. :) Thx. As someone who has spent time in our home, you know that we take it a day at a time. Certainly, everyone has seen us stumble. Hopefully, they've also seen us get back up. It's all about resilience. :)

  7. I too am in awe of how you cope and your amazing resilience and wonderful ability to maintain such a positive attitude.

    1. Hi, Paula! Thank you. Anyone in my home in the days following would say that I had my moments of struggle while I was processing it. I hope any parent in my shoes understands that we all have our own timeline with this. Surely this is all natural. However, we do continue to move forward because we have to. You would, too. I'm certain of that.

  8. I watched a family member have multiple seizures as a child. I hope your son has some good friends he can talk to about this because the scars will remain and he will need someone outside of the family to talk to about this at some point. He may not be talking about it now, but he will need to someday.

    1. Thank you for taking the time to comment. I very much appreciate your experience. You remind me that, while our younger son has his own diagnosis of ASD, he is also a sibling to ASD. Siblings really are called to shoulder so much more than their peers.

      Our younger son's diagnosis only complicates things.

      Yes, he will need to talk about this later. You are right, and I appreciate the warning. Thanks for stopping by.

  9. Amy, I'm always in awe of the spirit with which you take the stuff that life keeps throwing your way.

    1. Thanks, Corinne! I take it all one step at a time--sometimes not very gracefully also! We all will find our way.

  10. You are right about one thing (your response to my blog) when you write what you feel you pull your readers all the way in. I don't have words of wisdom for you, Amy, but I wish I did. You're a strong woman and a gifted storyteller. Hugs to you.

    1. You flatter me. Thank you.

      And, thank you for my new mantra! :)

  11. Amy, this is a powerful story and I thank you again for letting us all the way inside your family's world.