Aiden's Journey

One Little Boy's Battle with Dravet Syndrome

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No Words

Posted by Nicole on February 7, 2011 at 11:14 PM Comments comments (0)

Here’s another one of those words-can’t-express-the-sentiment situations. What do you put on the internet for everyone to read about other children dying? It’s not my pain to discuss – mine doesn’t even compare to the real earth-shattering devastation three other families are dealing with this week. And yet it’s still there.

 

I didn’t know any of the children who passed this week. One, an 8 year old, succomed to a long seizure after contracting H1N1. He looked like a happy kid, more “normal” than not, smiling, playing, someone I’d hope Aiden could be like. And then he was gone. I feel guilty about the sigh of relief I involuntarily released upon realizing Aiden’s already had H1N1 and though it was a difficult 6 weeks, he made it through.

 

Another, a 3 year old boy, let go after a 2 and a half hour seizure. There just are no words.

 

If there are no words for those two, what am I supposed to feel for the family whose daughter is on life support after seizing for 2 days as they contemplate whether to let her go?

 

I feel lucky, and blessed, and out of control. Aiden had a bad week, but he’s back again, smiling, laughing, learning, and loving. I don’t know why it was their time and not his, and I can’t imagine waking up one day without him. Yet I do imagine it, usually when one of our angels is taken too soon.

 

I didn’t mean for this to be a “downer” entry – I haven’t even told anyone about the children on my mind this week because I don’t want to fixate on events that may never happen to us. On the other hand, I can’t simply ignore them and move on as if nothing’s happened – they’ve colored each moment I’ve watched Aiden from the other side of the room and thanked God he’s still here with us.

 

So there you have it – No pearls of wisdom, no humorous moments, a little guilt, a lot of love, and sorrow for families I’ve never met before. That’s where I am this week.

SUDEP

Posted by Nicole on June 6, 2010 at 10:00 PM Comments comments (0)

She carried him up the stairs, his heavy legs dangling below her waist. She couldn’t believe he might soon give up these afternoon naps, that she might soon not get to smell the sweet scent of his hair next to her cheek. At 2 ½, he was already getting some of the little boy features that marked the start of a long, beautiful life. He opened his groggy eyes for a brief moment, nuzzled her nose with an Eskimo kiss, and placed a soft, squishy peck on her cheek. Despite the long morning they’d had, she took in the sweet warmness of his body as she carted him up for what would be his last afternoon nap. She had no idea these things would suddenly be gone, not because her little boy had grown up, but because he hadn’t grown up. 

 

What do you do when a child is wrenched from his mother’s arms too soon? What can you possibly say to the grieving parents who have gone to Hell and back, a journey no parent should have to make, one that none of us can possibly imagine? How do you let their brothers or sisters know it’s okay to live their lives? I guess we don’t. Because we can’t possibly understand the depths of their loss, no matter how much we fear it ourselves.

 

Every month or two, our small Dravet community loses another child to Dravet syndrome, either from SUDEP (sudden unexplained death in epilepsy), prolonged seizures, or complications. Our delicately balanced boat was rocked again this week when a child from Wisconsin lost her battle, forcing us all back to that dark place where we hug our children extra close and thank God it wasn’t our turn. Because you never know if or when it will be – that’s the ugliness of this. Seizures are sudden, and we always wonder if this will be “the one.” An 80-85% chance of surviving to adulthood seems like pretty good odds at first glance. But stretch that 20% worry rate out over 15 years and you wind up with a set of mentally, spiritually, physically exhausted parents who feel like they’re playing a game of Russian roulette. It’s totally random.

 

That’s when my extremely private faith collides head-on with this public journey. Nothing we can say to these parents helps them feel better – our condolences only help ourselves. Yes, we know the child is in Heaven, finally seizure free, finally running and able to enjoy life the way we dreamed they would. And yes, we know God has a perfect plan for those left behind. We know He’s in control and still loves us, despite the fact that they likely feel abandoned right now. The child is free, surrounded by angels, and watching over their family.

 

Would I believe this faithfully if it were my own son? If I were the one left behind to wait? The one who had to carry on and show his siblings what a beautiful, purposeful, meaningful life he lived when all I might want to do is curl up in a hole and shut the rest of the world out? I hope so. My faith says yes, my flawed human brain says no. So I pray these things:

  1. That the peace that surpasses all understanding might surround the bereaved families,
  2. That these tragedies might grow seeds of faith where the soil seems impossibly barren, and
  3. That Aiden lives a long, fulfilling life, so it's never my turn.