As many children with Cerebral Palsy do, Oliver also has epilepsy. He doesn’t have very many seizures but when he does have one, it doesn’t stop on its own. Although we have rescue medication that we carry with us at all times, it has never actually worked. So we are left with only the choice to call 911 or rush him to the nearest hospital to get a high enough dose of medication to stop the seizure, but which also sometimes causes him to completely stop breathing. Obviously, this is an incredibly traumatic experience for us all and we do everything in our power to avoid triggering his seizures. But sometimes, they just come out of nowhere.
Friday night Conrad put Oliver to bed around 9 o’ clock. Our schedule had been delayed that night and I hadn’t had a chance to give Oliver his evening liquids. When I went into the bedroom half an hour later to give him his water by g-tube, his whole body was jerking, his eyes were open and drool was pouring out of his mouth. Thank god Conrad had put him to bed on his side… on his back he would’ve choked long before I’d found him. This is the part of epilepsy that no one sees… the knowing that, at any point, if your attention lapses, it could be the end. That’s a burden that is hard to accept and difficult to live with in a healthy way.
I’ve been reflecting a lot since Friday night and have realized that epilepsy is the craziest part of this whole journey so far. It can turn any normal carefree day into a life-threatening emergency and you just never know when it’s coming.
Oliver has many other health issues. The cerebral palsy and all its challenges are difficult. And when he gets pneumonia, it is, of course, extremely stressful. But these things are predictable. They, and all the emotions they bring up, seem manageable because they are either constant or come on slowly and are not an immediate threat to his survival.
Seizures are different. Epilepsy is like a tiger, hidden in the shadows, stalking its prey, waiting for a moment of weakness to strike. As the mother of a child with this condition, there isn’t a day that goes by that I’m not preparing, in some part of my mind, for what will happen if he begins to seize.
Every morning when I send him off to school, I organize my list of things to do, and then quickly plan for what will happen if his aid, Aaron, calls to say they’re on their way to the hospital. When I see his number come up on my phone, I always hold my breath as I pick it up. Every time we take a hike in the mountains, I know it is a risk. I think of how far we’ll be from cell phone reception and review the CPR steps in my mind, praying that I won’t have to use them. It’s a really crazy way to live…
Learning to balance this constant level of stress is an incredible challenge and one that I certainly have not mastered. But this weekend, I discovered that I am at least moving in that direction.
This time, something in me was different. Friday night I entered the emergency room with a sense of calm that I’ve not experienced in this situation before. My voice remained steady while I gave all of the details to the nurse. As they whisked him away to triage, Conrad grabbed my hand and as our fingers interlocked I felt the strength of the bond we’ve built hold us up as we walked briskly behind the trail of doctors, and entered this next battle together.
When his oxygen levels began to drop, the room suddenly filled with people and things became deadly serious. The nurses feverishly tried to find a vein to get an IV line in but as they blew one after another the seconds felt like hours. I felt the fear of further brain damage arise within me. Finally the doctor turned Oliver’s cheek quickly to the bed and inserted a line directly into his jugular vein. At that point the gravity of the situation really set in. That suffocating feeling of an impending panic attack rose in my throat and my palms started to sweat. I pressed myself against the wall of the triage bay, tried to breath and stared wide eyed as the doctors worked to stabilize him.
Then suddenly I became aware of myself. A part of me dissociated and became a calm, present, passive observer. As I witnessed this scene unfold, I was able to actually see how events like this become lodged in my psyche as trauma. I watched the images before me burning themselves into my memory, knowing they’d revisit me for many years to come. I felt the consuming tension of fear run through my body. And when I finally took a breath, the all too familiar scent of hospital filled my nose, creating an indelible olfactory imprint that would surely resurface sometime in the future.
I’ve never been aware of myself at this level before and I realize now that I was actively processing the trauma while it was happening… which seems, I think, like at least a step in the right direction.
When Oliver stabilized, I felt oddly at ease, even though I knew there was a good chance he would wake up more permanently affected than before due to the length of the seizure and drop in his oxygen level. Although I did voice these concerns to Conrad, there was a sense of knowing that even if he did wake up worse, we would handle it. We’ve always known that this is a possibility and it seems that somehow, over the years we’ve gotten used to that idea.
That night, for the first time ever after a seizure, I went home while Conrad stayed at Oliver’s side. We’d left Nicco behind with our neighbor and I desperately needed some sleep to ease my own health issues.
Although it was a strained night of reoccurring worries of how our life might change if Oliver awoke more severely affected, regrets over not having checked on him sooner and reflections upon how unmanageable this life can seem at times, I continuously reminded myself to remain focused on the present moment instead of projecting into the future or reliving the past. I have to say, this is a really tough thing to do when the object of your obsession is a tiny human who you care for so very much.
Words couldn’t possibly describe my relief when Conrad finally sent me a video of Oliver waking up, with normal eye contact and the movement of all his limbs. I gave immediate thanks to the universe for not forcing me to face that next level of loss.
The most interesting part of this entire experience though, is that my typically weepy, uncontrollably emotional self who usually runs the show during these episodes, did not appear. This tells me that this time, I either processed things differently or have reached a new stage in the grief/acceptance process. I’m not sure which it is and perhaps it just has more to do with how, even the most traumatic things, over time, can become normal. Either way, I am incredibly thankful that something has shifted and am more motivated than ever to continue this work through grief and towards consciousness.
My goodness! I couldn’t breathe while I read this! I was so glad to see the last picture of Oliver smiling! Wow- I am astonished at the level of daily stress you two deal with on a 24/7 basis! It’s great you have a neighbor who can help out at any moment> what a treasure. Be sure to take care of yourselves too.
Keeping you all in my prayers.❤️
thank you camille! yes, our we have the best neighbors ever!! we’re so lucky 🙂
Beatifully written. I hope writing it was cathartic and know that your strength will certainly give strength to other families in similar situations. Our thoughts are with your family….and hugs to Oliver
thank you bonnie. yes, since i’ve started writing in this way a lot has shifted in my life and perspective. i’m so thankful for this outlet and very much hope that it can be a support to other families as well.