Her seizures stopped — but I’m crying

Eloise hasn’t had a seizure in nearly two days.

That is a miracle considering her last week alone:

• Tuesday: 43 seizures (with 6 different rescue medications)
• Wednesday: 74 seizures (with 2 rescue medications)
• Thursday: 60 seizures (with 1 rescue medication)
• Friday: 75 seizures (with 4 rescue medications)
• Saturday: 56 seizures (with 4 rescue medications)
• Sunday: 67 seizures (with 3 rescue medications)
• Monday: 51 seizures (with 1 rescue medication)
• Tuesday: 0 seizures
• Wednesday (today): 0 seizures

What is even more interesting is that she started a new medication last week (Clobazam), but we added back Stiripentol on Monday — which is the very medication we had been so sure caused her seizure increase in the first place. We had just weaned her from it 2 weeks ago. Before, we thought it was poison, now in this combination it is her salvation.

At this point, the doctor and I both agree that, likely, Eloise’s “seismic eruption of seizures” had very little to do with her medication changes in September. It was more likely that it was something often seen in kids with Dravet Syndrome — an unprovoked tidal wave of seizure activity that happen somewhere around this age. Although this massive amount of seizure increase may be “normal” for many Dravet kids, the doctor told me research shows that 25% of them die during this period.

That really sunk in. We are so grateful she made it — she’s going to make it.

The cocktail of drugs she is on as of Monday night is what is known as the magic triad for Dravet kids (Sodium Valproate, Clobazam and Stiripentol). Two days of no seizures is her longest stretch of seizure freedom in the last 2+ weeks. Clearly, it looks like the medicines might have worked.

I should be jumping for joy. I should be writing a post about how incredible this is after weeks of seizure after seizure after seizure — because it is. It really does feel like a miracle. Eloise’s doctor even shed a few tears when she found out. Because we were all shocked.

That’s what I want to want to write about.

But I’m not. (Okay, well, I did at least start with that.)

Instead, I’ve been crying on and off. Not just tiny tears. But uncontrolled crying so hard at times that snot has run down my nose. I wish I could say it was from joy but, instead, it’s coming from a deep, guttural grief that surprises even me. Why?

Good question.

As close as I can figure, it was triggered by the Keto diet, which we started today.

I’ve tried to understand what is causing such profound feelings of grief and loss in me. In fact, Ketogenic diet — which we started today — is the first option we suggested ourselves to doctors last year when Eloise started having seizures. It’s natural. It helps in around 50% of cases.

So why the sadness?

Because I’ve talked to many parents since last year and, for many, keto caused massive eating regressions in kids that were orally fed. And, well, if you have been following along for awhile, Eloise doesn’t have a great feeding track record. Some days she eats and drinks great. Some days — or weeks, or months — she doesn’t. And, with keto, amounts and proportions are really important.

So then what do you do if your orally fed kiddo doesn’t eat well on Keto no matter what you try?

You put in a feeding tube.

And this, I think, is where my grief comes from. I am pre-grieving that she will likely have a feeding tube.

I cannot tell you the amount of times parents of kids with feeding tubes (affectionately called “tubies) have told me personally how much of a positive gamechanger they were. The amount of stress reduction and feelings of peace that came with the solution. I can name off so many reasons why getting a feeding tube would actually be great. I mean, shoot, just having a cannula in her arm this week has been amazing in administering medications whether she wanted them or not.

I know all of these great benefits logically. But, still, I’m grieving.

Why? What’s my problem?

My first “real job” out of high school was working with mentally disabled kids and adults. To say I loved it would be an understatement. It was still my favorite job I had ever had. So when we learned at our 13 week checkup that Eloise might have Down Syndrome, there was 0 question in my mind — we were keeping her. I LOVED Down Syndrome folks. All I could imagine was how joyful our household would be with her in it growing up alongside her neurotypical twin brother (whom we lost a month later in utero).

So then, again, what the heck am I grieving?

There’s been something of pride in me when I’ve explained to people, “Babysitting Eloise is just like babysitting an adorable, snuggly 4 month old in a toddler body.”

In my head, I added, “See, it’s easy to watch her. She’s not complicated. She’s just delayed. And that’s okay.”

Her 4 times a week therapy? It’s her version of swimming lessons other kids take.

Her twice a day medicines? It’s her version of the vitamins most kids take.

Her occasional seizures? Just a quirk. They didn’t come often anyway.

As far as I can tell, deep in my soul I have no problem having a child with profound disabilities. Eloise is a delight and we have accepted her. Brian and I both say with full confidence that we would rather have her than no child at all.

But having a child with profound medical complications? For some reason, that is much, much harder. And it’s a concept, an identity, that I have avoided.

Eloise’s occasional seizures? An inconvenience. Lots of “normal” people have seizures on occasion.

But a feeding tube? Somehow, in my brain, that crosses a line into medical complexity that is far beyond “normal.”

And, somehow, medical complexity equates with trauma in my mind somewhere deep down.

It feels like she will change from “Eloise the cute kid who is just like a baby.” to “Eloise the cute kid who has a feeding tube.”

But why should a feeding tube define her? I know so many other kids with genetic disorders who have feeding tubes and their tubes don’t define them at all — at least not in my mind. I see their adorable personalities and quirks and that is what I think of when I think of them. Not their tubes.

So why, somehow, do I think it will be different for Eloise? Am I afraid others will recoil from her in disgust at this strange contraption they have never seen before? Am I afraid others will see her as less than other delayed kids if she gets some of her nutrients that way (because the reality is even if she does get a feeding tube, we will still be feeding her orally for most of her calories)? Am I afraid of the complication that will come at the beginning of learning something new and incorporating it into our lives? Am I afraid it will be harder to find people willing to babysit her because they will be afraid of it?

I don’t know.

Maybe I’m just afraid of rejection. Of her. Of us.

Because we have already learned firsthand that when tragedy strikes a family, it is so scary and overwhelming for others that their usual reaction is to run and hide because they don’t know what to say. I’m sure many cancer survivors can attest to that.

I don’t want to feel pity for our lives. I don’t want others to feel pity for our lives. I want them to see Eloise — sweet, happy, active, talkative, and full of joy. I don’t want them to see a feeding tube. Or seizures. Or delays. I want them to see a life that is worthy of living. A life worthy of love.

So, today I cry.

Tomorrow, or maybe the next day, or maybe next week, hopefully those tears will turn into a quiet confidence that no matter what comes our way, we will figure it out. Brian and I will navigate it together. We always have.

Really, I’m so grateful Eloise is still here. But still I grieve something deep down.

I would apologize that I am not playing the part of the good Mom overjoyed with gratitude that her child just made it through 2 weeks that could have literally killed her and instead it looks like a miracle really just happened.

But, well, I think we too often hear sterilized stories of perfect good triumphing over perfect evil — with no messiness in between.

I’m messy. But I’ll figure it out. I always do.

Sending our love.