Please Don’t Tell Me I’m Losing My Son

“Momma, I’m blowing on a wishing flower, and I’m wishing no more doctors”

Horatio G. Spafford, his wife Anna, and their five children lived in Chicago in the late 1800’s. Horatio was a successful lawyer with a booming business, when tragedy struck and pneumonia stole the life of his young son.

That same year, the Great Chicago Fire destroyed his business.

Not willing to give up, The Spafford family pushed on, rebuilding the business, and holding their family together.

Two years later, Anna and their four children boarded the ship Ville Du Havre, hoping to find some relaxation and rest in Europe, with Horatio joining them a few days later.

But as fate would have it, tragedy struck again when the boat collided with another, causing the Ville Du Havre to sink.

Anna was found floating on a piece of wreckage, all four of her remaining children drowned. “God gave me four daughters” she said to another survivor. “Now they have been taken from me. Someday I will understand why.”

She then wired Horatio a message that simply said, “rescued alone, what shall I do?”

I didn’t want to come back here; back to this blog. Pages of my struggles, triumphs, chuckles, and tears, all melting together to showcase one thing; My Life.

When I first came here, I set out to see if anyone else felt the same way I did. I was looking for a light to lead me down my darkened path.

But somehow, I ended up being that light, for many of you.

I was sitting in my car the other day, exhausted from holding a seizing child in my arms all night long, when a song by Mercy Me came on the radio, called “Even If.” Listening to the lyrics (in bold throughout this article), it felt like the air was being sucked from my lungs, while the words were being torn from my soul.

I fear that I’m losing my child.

Seizures continue to ricochet through The Boy Child’s brain at night, robbing him of his cognitive functions, and the ability to control his own body.

Nothing is off limits.

His room — which used to be filled with Ninja Turtles, and Legos that he would hide under his sheets to play with when he was supposed to be sleeping — has now turned into a virtual prison.

Rails on the bed so he isn’t thrown onto the floor, a camera so we can watch him, a baby monitor so we can hear him, an extra mattress so we can sleep next to him, and even bars on the window for those times when he just isn’t thinking clearly.

I spend my time pumping him full of medications with black box warnings, because where we are at right now, medications that are known to cause brain growth restrictions and heart arrhythmia’s are a safer alternative than allowing what is going on inside of his head, to continue.

But so far, the medications haven’t stopped the seizures.

Several months ago The Boy Child had some intellectual testing done, and I was told “I have never in my career, had a child score so high.” But yesterday, he started his first day in the special education classroom at school.

He is slipping away further and faster than I can catch him and I don’t know where he is anymore. I can’t reach him.

And so I didn’t want to come back here, back to this blog, because I wasn’t sure what to say to you all. I couldn’t pretend that everything would be OK, when it didn’t feel like the truth. I couldn’t stand by my own advice and the words that I’ve asked all of you to live by — telling you to just keep moving and it will all work out — when I was suddenly doubting it myself.

We really just needed a break.

But, while we were there, I got very sick and ended up in the hospital. When I was feeling better, right before I was discharged, I looked down at my arm and the IV waiting to be removed, sitting just above my Kalahari wristband, and the visual image of irony punched me in the face.

We were trying to make the best of things, and it didn’t work out. I’d been trying my whole life to get to the “good place,” and just when I thought I was there, I got smacked in the face again.

I’ve spent a lot of my days coming to terms with the realization that life isn’t going to be what I wanted it to be for my son, and I’ve spent my nights sitting in the darkness next to his bed, listening to him ask me why I won’t make it stop. 

Maybe it was just a reminder, that I’m never supposed to give up.