“Mommy, am I going to die?”


The first time we went to Cee’s primary care doctor for all this, way back in January, Cee said to me, “Mommy, am I going to die?”  Right there in the waiting room, we talked about how everyone will die some day, and how if one stays close to Jesus, it’s actually a happy time.  Cee has always been comforted by our faith, and that was enough of an answer.  But that moment has haunted me throughout this whole experience.

I think all parents at some point consider what it would be like to lose a child.  With everything Cee has been through, seeing how her strength and energy have disappeared, the thought has been constantly nagging.  Living in a relentless battle between fear and trust is exhausting.


The song “Held” by Natalie Grant has helped me remember that we’re not alone.

Two months is too little
They let him go
They had no sudden healing
To Think That Providence
Would take a child from his mother
While she prays, is appalling

Who told us we’d be rescued
What has changed and
Why should we be saved from nightmares
We’re asking why this happens to us
We’re asking…
Who have died to live, it’s unfair

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and know
That the promise was when everything fell
We’d be held


Cee is doing so much better, but that nagging fear of losing her–it’s always there.

Yesterday Cee and Elle were laughing and playing in their room when they were supposed to be going to bed.  It made David and I pause, because that hasn’t happened in so long.  The little moments like that go a long way in helping squash that feeling and remind us that we’re held.

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