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July 18, 2015

“Where dark woods hide secrets,
And mountains are fierce and bold,
Deep waters hold reflections,
Of times lost long ago.

I will hear their every story,
Take hold of my own dream,
Be as strong as the seas are stormy,
And proud as an eagle’s scream.

I will ride, I will fly,
Chase the wind and touch the sky,
I will fly,
Chase the wind and touch the sky.”

~Julie Fowlis – Brave (Original Score)

I feel like we have walked up to the abyss and looked over the edge again. It feels like reliving the old nightmares. Test after test, gloom and doom, predictions and diagnoses….. “She’s losing strength,” one doctor tells me. “It’s disease progression,” he says matter of factly. “You should be expecting this, you know mitochondrial disease is progressive….”

“Developmental regression due to continuous seizure activity,” another one decides. Skill loss, strength loss, weight loss, gloom, gloom, doom, doom…. Test after test, medicine changes…..

And yet, from the familiar abyss comes a light. Suddenly she starts to wake up a bit from wherever she had been these last few months…. Suddenly the signs and the smile come back…. Suddenly the mischief maker is back in her, climbing over couches and communicating in new ways…. Suddenly, every intervention starts to work. The medicine settles in and starts to take effect, the nutritional changes seem to work, she is responding quickly to therapy, learning new skills and regaining some of what was lost…. She is showing us again, just how wrong they can be. She is back from wherever she was and it’s game on.

And then, in the blink of an eye, it all starts to slip away again. In a matter of days. Is it a virus? No…. Oh, God, she’s having more seizures. What changed? I keep asking myself… What did we do to screw this up? I am coming up empty. But somehow, this week, the seizures are back, and she is so, so tired.  I can hear the march of my heart back to the abyss. Back to the fear…. But we can’t live there. We can’t.  But I don’t want to push her. I couldn’t wake here today, try as I might…. As I made the phone calls to therapists to cancel her day, the fear snuck back in….  The fear I had been trying to keep at bay all week. And I don’t know what to do. So I come back here. Because maybe it’s safer here. I can’t let the fear take over in front of them.

My poor sweet boy. He didn’t know. Or maybe he did. Maybe that’s why he asked two weeks ago before she went into the hospital for yet another test, “Is she really sick?”  “What’s wrong with her?”  and I answered so carefully. He knew I was tiptoeing… He knew…. But he had to hear it from me… He kept pressing…. Carefully…. optimistically…. honestly…. If nothing else, we must be honest, or they will never trust us….. I had kept it from them….  All this time, I had tried so hard to keep the scariest of it from them….. The words slipped off my tongue and I could tell from his face he already knew, had already researched it on his magic computer….. Those two words…. Mitochondrial disease…. He knew what it meant….. I was left to tell him just how well she was doing now…. how much she has overcome- and she has…. so much…. But the pain in his face broke my heart all over again…..

But she has overcome so much. She has stayed so strong through all of the predictions, proving them wrong at every turn… Minor setbacks here and there, right? That’s all this is. Because here she is, healthy, smiling and thriving.  Enjoying her days, teasing her brother and sister, snuggling with Mom and Dad… She is doing so well. But that familiar fear is always there…. waiting in the dark corners, sneaking in when she won’t wake, when she suddenly falls asleep at strange times, when she stares off for just a little too long….

But she will be fine. She always is, somehow. She is sassy. She is strong. She is proud.  And she will fly. IMG_5980

5 Comments leave one →
  1. July 18, 2015 2:25 am

    Bless her heart. I pray for a miracle to touch her and embrace her and make her well. I’m sorry to hear of the problems and I really do pray for a miracle for her.

    • July 19, 2015 1:49 am

      Thanks PJ. She seemed better today. Even took her to explore a local cave (though I’m a bit sore from carrying her much of the way! 😉). I’m hoping this week has just been some sort of virus that was triggering things…. It’s frustrating. I do so appreciate the prayers. xoxo

      • July 19, 2015 1:50 am

        I’m happy to hear that she is doing better. I hope and pray it continues. 🙂 ❤

  2. bizigal permalink
    July 19, 2015 2:32 am

    ok, you can get through this. Keep us posted. We care.

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