Girl, Interrupted

During this quarantine, I’ve been doing this app called 1 Second Everyday, where you basically create a video montage over a period of time made up of, you guessed it, a video clip of 1 second from each day. The Kid, who is a perpetual optimist and doesn’t want to think about or remember anything negative, was perplexed by my decision to document this period in our lives (“Why would you want to remember this? This is the horriblest thing that’s ever happened!”) I reminded him that some day, we’re going to want to look back and remember this.

He was even more perplexed when I included one second of The Baby’s first recorded seizure and one second of his EEG.

It is jarring. There’s clips of us flying a kite, swinging in the front yard, playing Wii, shooting each other with NERF guns, eating dinner and then BAM.

Seizure.

Egad, if that isn’t an accurate description of how this whole Lennox-Gastaut Syndrome thing has developed- out of left field, dropped like an angry pig right in the middle of our “normal”.

Now, our day is peppered with us yelling at Alexa to track a seizure when he has one.

Alexa, tell Seizure Tracker to track a seizure

If I’m being honest, it’s a disturbing addition to our day. We’re just playing on the rug or doing snack time or swingin-

Seizure.

Alexa, tell Seizure Tracker to track a seizure.

I cried a lot on Wednesday when Dr Google delivered his terrible, no-good news. “I don’t wanna do this,” I wailed to my counselor who made room in his schedule for a visit with me.

Of course, I don’t. Who wants to watch their child go through this? Who wants their future to be thrown into a fog of the unknown for the rest of her life? No one.

But that’s the thing about suffering. Not very many people choose to do it willingly. To be clear, I didn’t.

I cried again yesterday off and on throughout the afternoon. After the boys were in bed, Alex and I laid in bed and I cried again, the ugly cry of a broken-hearted woman.

I realized that I’d been treating The Baby differently since the diagnosis a week ago. Sure, I was doing the physical act of mothering- the changing diapers and feeding and seemingly neverending bottles. But the bricklayer in my heart had started to build a very small wall between me and The Baby.

It’s protective, of course. How can I marvel at how well he turns book pages when he might lose that skill tomorrow? It was hard for me to spend time with him without seeing an overlay of a future when the light goes out of his eyes.

Protective.

Last night, I realized that I couldn’t live this way, this half-hearted, guarded way of mothering. It’s not like it would protect me from heartache anyway. Not really.

Even heartache can find its way over a wall.

On the heels of (almost) finishing Atheism for Lent, I’m trying to be mindful to not use religion or faith as a pacifier right now. Don’t get me wrong. I would *love* a pacifier, a big giant one, right now so I could just slurp happily and go to sleep and not have to think about anything but I’ve spent 40 days considering how

Alexa, tell Seizure Tracker to track a seizure.

…considering how maybe that’s not how I want to live my life any longer.

(Before I go on, let me say this. So many people have reached out to offer words of support and encouragement and prayers. I promise you that I treasure each and every one of them and I do not feel cynical or resentful or unappreciative. I don’t want anyone to feel like their words of comfort were not appreciated- they are, all the words, even ‘fuck’, which someone said she’s never used as a word of encouragement before but seemed appropriate and totally was.)

Here’s what I mean: In the past, I may have given myself a pep talk, like “God’s got this!” or “God is on The Baby’s side!” And those things are emotionally helpful, hopeful. It feels like I’m sharing some of the burden with an all-powerful being who, supposedly, has my and my son’s best interest at heart.

But at the core of the readings of Atheism for Lent, Peter Rollins is asking us to force ourselves to consider that maybe “God don’t got this.”

Alexa, tell Seizure Tracker to track a seizure.

What then?

What if this is turns out to be the worst case scenario? What if his seizures are uncontrollable on meds and he starts having 100s of seizures a day and he requires around-the-clock care and he’ll never walk or talk or learn? What if Alex and I just become giant balls of stress who only work and nurse and we never get to stop having someone rely on us to survive…ever? What if I never stop having to take care of a giant infant?

You see, for me, “God’s got this” has always had a tinge of “This is gonna go my way, because I’m faithful, right?” Naturally, it hasn’t always worked that way but my amnesia for times God has failed me is very strong.

In this case, with something this big, I don’t even want to lean into “This is gonna go my way” because it sounds like it’s probably

Alexa, tell Seizure Tracker to track a seizure.

…it sounds like it’s probably not gonna go my way. That optimistic option is no longer available to me.

I am standing on the abyss with my son, who’s already in motion over the edge, and we don’t have a safety net.

Alexa, tell Seizure Tracker to track a seizure.

Last night, when I was finally able to put words to the wall I’d been building, I crept across the hallway to where The Baby was still rolling around in his crib, swiping his mouth with his hand indicating he was still thirsty. He stood up and reached for me and I gathered him into my arms and just held him and wept. I nuzzled his neck and apologized for building a wall, for not loving him wholly.

This is not something I can do half-hearted. I have to hand over my whole heart, no walls or pacifiers, and I fully expect to it to be shattered, maybe many times over.

There are no Binkys here. There is no comfort blanket or guarantee that things will go my way. There is no door to shut or wall to hide behind. I cannot rely on “God’s got me”.

It is terrifying and I’m having to be brave.

Alexa, tell Seizure Tracker to track a seizure.

Here is the God’s honest truth. Choosing to stare this thing in the face and still love my son with my whole heart feels holy, maybe the holiest thing I’ve ever done.

How many times have I loved someone, but with strings attached? We all do it- we give money to panhandlers hoping they don’t spend it on drugs or alcohol, we do the give-and-take thing in relationships. Part of that is healthy. We can’t only have relationships with people who are perpetually difficult, but it’s funny how often we avoid any relationships with people who are even just a little difficult. It’s human, I think.

Protective.

But, maybe, just maybe, this is my chance to learn to just love with no expectations. To know that this is going to be a literal fuckton of work and tons of setbacks and oceans of tears and it might never stop but I’m gonna choose to do it anyway.

Alexa, tell Seizure Tracker to track a seizure.

Today was better. Maybe I’ve turned a corner. Maybe tomorrow will be terrible. I don’t know. I don’t feel like I’ll ever know ever again.

What I do know is that it’s time to roll up my sleeves and get to the holy work of loving this boy with the sassy left hand and the goofy faces with everything I’ve got.

Onward.