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Monday, July 22, 2013

That Slippery Slope

I sat beside him on the edge of his bed this morning, lingering. I sat, and I looked at him, my older son.   I looked at him, although I suspected that he would not return my gaze.   He had stopped doing that recently.

His eyes were blank as he stared off to his side.  Slowly, he lifted his right hand, and he began to shake it.

Over and over again, he shook and he shook. He shook that hand as though he was trying to fling from his fingers something that was sticky and stubborn. He shook. Quickly. Purposefully. Then stiffly and awkwardly.

At times, he would stop, frozen in his space.  And then, I could see the expression in his eyes. His thoughts had changed. It looked as thought he was thinking about shaking that hand. Perhaps? Yes, certainly, the intent was there. Yet, somewhere along the long neuro-pathway that wound its way from his brain to his lower arm and wrist and hand, intention alone lost the ability to life and shake his muscles.

At best, all he could execute was a series of deliberate twitches. I watched those twitches like a hawk.

Ten days ago, in the early hours of the morning, as he was returning to his room from a bathroom break, my older son stopped at the end of his bed.

"What's going on, Buddy?" I asked him, wishing I could somehow urge him to crawl back under his covers.

Instead, unexpectedly, his legs stiffened, and he fell to the side. I lunged for him and caught him in my arms. It wasn't long before not only that one hand but his entire body began to shake.  He was having a seizure.

For not the first time since becoming a parent, I held my child as he shook, protecting his head from injury. There. In the quiet of his room while the rest of the house lie sleeping unsuspectingly, my older son and I were at the mercy of his epilepsy. We were waiting out the storm of just one of the special needs that had been dealt to this household.

In the early hours of the morning, before the sun had yet to light the sky, before the first of the morning birds voiced their greetings to the day, my son seized in my arms. And, when he finished, I cleaned him, helped him into his bed, and kissed him softly.

"I love you so much," I told him.  "Rest well."

Leaving his room, I closed the door and stopped, standing still in the hallway outside of his room. I immediately drew in a deep breath, holding it for a short while, and when I exhaled, I listened to the silence of my sleeping household. Perhaps I could sneak a few minutes of rest before the rest of the day unfolded, I thought.

I climbed in bed, closed my eyes and thought of far away places.

By comparison, this seizure was not as large as some of his others. I sought solace in that fact; however, in the days that followed, I saw him struggle to pull even his common words from his brain. He would look at me. He would try, but he just couldn't do it.

And then the twitching. And the shaking.

For some reason, it is the after effects of a seizure in my son that affect me worse than the seizure itself. I can't explain why. I'm not scared or upset when I see him seize.  After all, I've seen him through a lot of things during his life. This is just another. Different, perhaps, but still the same.

Yet, when the emergency is over and life continues, it is when I see his body still suffering from the upset that has happened in his brain, when I see the halting movements and the loss of skills that were so hard to acquire to begin with...it is then that my blood races. I see unnatural movements, and my heart jumps. I catch my breath.

I fear that slippery slope.

I think most special needs parents at any given time feel that they live at the top of a slippery slope. Or, perhaps, it is the good day that they are at the top. Maybe most of the time, they spend their days slowly slipping down or climbing back up from a regression.

Epilepsy is fairly new to my older son, but when it hit him, it hit him hard. I guess I fear the fast fall down that slope.  I hope that it never happens, yet the realist in me must always prepare for the possibility that it might.


2 comments:

  1. (((HUGS))) For me it's like I go into survival mode when it's happening and then the PTSD kicks in which seems to hit me harder too. :(

    Hang in there my friend.

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  2. The after would be harder for me, as well. Because each seizure has the potential of erasing something and maybe it will be permanent. That would always be my fear. Ten steps forward and eleven back with one unpredictable and uncontrollable seizure.

    I hope there is a med that stops these for him. I know it's trial and error. ❤

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