*** Trigger Warning*** Video of seizure activity
Last night I was reading a book in which the author mentioned the old adage, “If you want to make God laugh, tell him your plans.” The irony of perfectly timed reminders in life is certainly never lost on me.
Conrad and I have never created our own Christmas traditions with the boys because #1, we are rather untraditional folks, #2, shit’s been kind of busy around here for the last 5 years, and #3, whenever we make plans, they seem to unexpectedly get changed! But this year is just different. We’re both at home every day, business has been PAINFULLY slow this month and it just seems like a year for a little extra holiday cheer.
So yesterday we made a plan to give the boys their present on Christmas Eve to spread the festivities out a bit. We figured we’d get everyone up and dressed and then spend the morning testing out their new toy before all the snow melted away. As usual, life had other plans.
Sitting at the breakfast table this morning, Oliver’s mouth began to twitch. This is always the first telltale sign of an impending seizure. Sure enough, it progressed from twitching to drool and then the glassy look in his eyes.
This time, though, it was all so different. Normally, my nervous system goes directly into trauma response mode when he begins to seize. My hands shake, there’s a lump in my throat, I try my best to remain calm, but I am NOT actually calm on the inside. Typically, every seizure that he’s ever had flashes through my mind, and it is hard to focus on the emergency at hand. This morning, to my surprise, none of those things happened. I can only attribute this to the EMDR therapy and trauma reprocessing I have been doing since we had our surprise helicopter ride due to seizures a couple months ago.
This morning I calmly got the seizure meds measured out. My hands weren’t shaking at all. I calmly packed the hospital bag, took videos of the seizure (not for fun but because that’s what you do so the neurologist can see them), and Conrad and I talked through what to do.
Oliver’s seizures are getting more frequent. The epilepsy is changing and for our family, that means our strategy for treating them needs to as well. We now live 25 mins from a small medical center and a helicopter ride away from the Children’s Hospital. We no longer have a level 4 trauma center minutes from our door. And so, this morning we waited things out. It was a milder string of seizures than usual. For just over 2 hours we watched him oscillate between active seizures, auric phases and full consciousness.
Parenting a medically complex child is not as cut and dry as it may seem. Sure, doctors may be very clear on what “proper protocol” might be, but for the people actually living this life, there are many factors to weigh while making decisions.
Oliver’s last hospitalization was traumatic. Extremely traumatic. For him. For me. For us. And honestly, I wasn’t sure we made the right decision about allowing him to be intubated… such a drastic intervention for something that occurs so often. Then there’s the pandemic, which makes a hospital the absolute last place we want to be right now. Also, my health hasn’t been great, and each emergency taps my already tapped-out reserves even more. And of course, it’s Christmas for god’s sake. Fuck you, epilepsy. It’s Christmas.
In the medically fragile world, the battles choose you. And today, we chose to fight this one at home.
I’m not going to lie. Even free from the normal trauma responses, it was a tense couple of hours. And there was a hypervigilant tinge to the rest of the day as well. Every twitch of his mouth or bit of extra drool, catching our heightened attention.
But you know what, today it was the right decision for our family. Today, although our plans got shifted, we still got to give the boys their sled.
And they loved it.
Today, Oliver got to play outside in the snow, and open his stocking, like any other little boy would. Today, we got to create a tradition of our own, molded around our own family’s values. Today we got to stay here for Christmas, instead of spending the night 7 floors up in an ICU suite.
So, cheers to another holiday spent at home. Such a simple gift, but one we truly cherish.
We wish you all a spectacular new year, filled with stellar health and abundant wealth in each and every way. Our gift to you, only one small piece of advice… Please, above all else, don’t ever try to make any plans!!!
* I am aware that some people disagree with posting videos of a child seizing on the internet. While I understand this perspective, I also think that there is great value in terms of advocacy and education, in doing so. Seizure activity can be vague and confusing. I can’t tell you how many videos are posted to my support group page of parents asking other parents if it looks like their child is seizing. The opportunity to see what seizures look like in real life can be terribly useful for people trying to deal with or learn about this complex condition.