E is for…

I have never much cared for Halloween. Probably because one: my mom never put much stock in it, and two: because when my family was living down south many years ago we used to do cool things like go to the Discovery Place for Halloween. After moving up north to the middle of nowhere just dressing up and collecting candy, which could simply be bought in large bags at the store, (and not handled by total strangers) seemed like a letdown.

I know, I’m sure I’ll hear about it from a few people. But it’s the truth.

Why do I bring this up? In March of all times?

Well the biggest point is that many a year has gone by when I’ve actually forgotten that it was Halloween.

In fact, the past few places I have lived also came with no trick-or-treaters, so it was even easier to overlook the day.

But now, as of Halloween 2019, that date is permanently seared into my mind.

Not because I’ve suddenly developed an affinity for dressing up in strange attire or asking people I have never met for candy, but rather, it was another notch in the “let’s rock your entire world” belt that my family has worn for the past few years.

Halloween 2019, for us, was spent in the hospital, ending the day with a vague but definitive diagnosis of Epilepsy for the Smurflet.

We had no idea just how tough this diagnosis was going to become.

And on top of that, with all my family has walked though in recent years, nothing,

I repeat nothing,

Prepared me for having to walk with my child through something like this.

That small tiny creature that you have been tasked with protecting.

Then suddenly, despite all your best efforts, it all seems to unravel around you with the future ahead looking very, very long.

And overwhelming.

Since the initial diagnosis we have had many tests and medicine changes and doctors appointments and I never knew you could spend so. much. time. on the phone and still get

nowhere.

As of this post our little Smurflet is still battling largely still uncontrolled, daily seizures.

I will say that the bright spot in his diagnosis is that he technically has “Partial Epilepsy,” which means his seizures don’t affect his whole brain, so they aren’t as heart-stopping as say a Grand Mal seizure. They are, however, still seizures. That can happen up to 20/30 times in an hour.

They can knock him right off his feet, out of a chair, etc.

Despite a myriad of medications, we are still fighting to gain control.

Despite a myriad of tests, we are still looking for a root cause.

(In all transparency, we may never find an answer to that second one)

And I’ll be honest, I’m tired.

It wasn’t that long ago we lost my mom.

Truthfully, I am largely still working through a lot of that. And now, it feels like “here we go again.”

Here is another unknown that’s overwhelming and scary and we have no idea what tomorrow will look like, let alone two or four or ten years from now.

Of course, a necessary asterisk here to say that I fully understand our journey doesn’t hold a candle to many others. We’re mere months into this, and I know many other families have walked through fire (if you) will for many years. I definitely don’t want to take away from their journeys.

I just want to say that it’s hard. Watching your kids walk a difficult path while knowing you can’t do a whole lot to really help them hurts your heart like nothing else.

It’s easily the thing that’s brought me to my knees more than anything.

It’s humbling and terrifying and so many other words I can’t think of right now.

And I don’t wish it on anyone.

And although I admit it’s hard and I need constant reminders, I have to keep bringing myself back to the cross where I know my hope ultimately lives.

Because even my precious kids aren’t promised an easy life in this broken world.

So while I pray for healing in a physical sense, I’m driven also to pray that the Lord uses this to bring both my kiddos to Him.

As I watch my little Smurflet somehow turn two years old today, I am thankful for a big God, for the Smurflet’s strong little boy spirit, and for a world of modern medicine where even scary and relatively unknown diagnoses like Epilepsy aren’t a death sentence.

But mostly I’m thankful for a big God, who is strong when I am weak.

And who holds my little boy in the palm of his hand

No matter what.

Even if E is for Epilepsy.

So what do you think?

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