Faith versus The Terrifying Unknown of Alternating Hemiplegia of Childhood

Will Paige stop breathing today

Will she hit her record since her last severe event? 

Will she live to be in her 30’s?

Will she develop uncontrollable seizures?

Will she have a heart attack next time?

Will I get to hold my baby girl until I am old and grey?

The terrifying unknown. The unknown of if my baby will live or die. The unknown of what the next few minutes will hold, let alone tomorrow and the next day. The feeling of walking away from her crib, knowing something big and bad could happen tonight. Yet going to sleep anyway. How do I explain such a feeling? I know others have unknowns. I know the reality that any one of us could die in an instant. Yet, something is different about Paige’s condition – it’s there, in our face, 24/7. The terrible, big bad thing HAS happened to her – over and over again. And it threatens her life all the time – every day – every night. How do I survive? How do I get through every day? 

He is the radiance of His glory and the exact representation of His nature, and upholds all things by the word of His power. When He had made purification of sins, He sat down at the right hand of the Majesty on high. Hebrews 1:3

My faith – this thing inside of me that has held me together since I was 8 years old – it somehow beats everything I’ve ever feared. It gives me the strength to walk out of her door when I know something big and bad could happen. It gave me strength to tell my husband “If she dies, we will be OK.” 

Knowing that someone more powerful than I upholds the universe with His hands tells me that the universe has no power over me or my family. This disorder, alternating hemiplegia of childhood, is part of this universe – the Devil wants to use anything he can to get me out of Paradise, the garden. So he tried. And he failed. My mighty God – the one who upholds the universe – He conquered death. He conquered the thing I fear the most. My daughter will live eternally – no matter what channels and nerve signals are messed up in her brain.

The terrifying unknown versus faith – it no longer becomes the unknown. Yes, it may be unknown in my little bubble – yet in the spiritual places, my daughter has won. Her Lord has won. He has conquered AHC, he has conquered death and suffering by dying himself. He knows what dystonia is – paralysis is – He knows the feeling of not being able to get a breath. He knows the unimaginable pain of looking at the worst pain head on, and continuing to walk. And He did it for Paige. That is MY GOD.

So this morning, I’m sitting here writing. My daughter is in her activity chair eating. And yes, I know she could be paralyzed the rest of the day. I know she may stop breathing at any moment. I know this could be my last day with her. Yet my fear is not the end – it is only the beginning of my faith in the one who upholds the universe.

Step

Your face is pale,
Your eyes are drifting to and fro
It’s happening again,
It’s not sending the right signal
You’re helpless, you drool
You can’t even smile
You can’t even move
I slowly turn,
I take a step
I’m walking away from you

I can’t explain it,
I don’t know how I do it
This is your normal,
And now it’s mine
Anything could happen
that could’ve been my last kiss
Yet I turn,
I take a step
And I walk away from you

Is this what faith is, Lord?
A step although I’m paralyzed?
I want to run back,
I want to protect my girl
Yet I now know,
I now see
I’m helpless
I’m paralyzed
The only one who can help,
Is you

I walk by faith,
And not by sight
I take another step
Tonight may bring death,
It may bring renewal for all I know
But right now,
All I know
Is that you give me strength
To step