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Rainbows and Shamrocks

March 16, 2012

May God give you…
For every storm, a rainbow,
For every tear, a smile,
For every care, a promise,
And a blessing in each trial.
For every problem life sends,
A faithful friend to share,
For every sigh, a sweet song,
And an answer for each prayer.
~Traditional Irish Blessing

I sat on the back porch last night watching the storms move in. They were breathtaking. The silent lightning strikes in the distance putting on a fabulous display. I watched, mesmerized by the beauty and the silent, distant power of the storms.

Mary’s overnight EEG is tomorrow. 24 hours in a room at Children’s Hospital on St. Patrick’s Day. I’m hoping that they can catch one of these episodes on EEG. I’m hoping they can tell me what’s happening to my little girl. I don’t know if I’m relying more on the luck of the Irish, or Murphy’s Law here. I’ve been reading. It would seem that if they could diagnose the seizures, they could gove us a much more firm diagnosis, though I’m thinking we probably don’t want the diagnosis they may give. Many of the types of seizures that go along with mitochondrial disease (which they haven’t been able to firmly establish or rule out in Mary) are progressive and untreatable. That said, if they could call all of the episodes (there are several different types now) simple absence seizures we could be on an entirely new (and far brighter) path.

She’s never really been sick. She’s always been happy. Knowing that there is a silent storm brewing inside her, even now starting to take her from us, bit by bit, is at times more than I can handle. When I am with her, during the day, I couldn’t be happier just cuddling on the couch, wrapping her in the deep pressure that she craves, reading books with her, or exploring our front yard. It is at night, when the kids are asleep that the erie silence creeps in filled with worry.

But I can’t live there for long. My puzzle princess has her birthday party on Sunday, after we get home from the hospital. Once again, she floats in to save me from that cloak of worry. I have little time to focus on the fears, because I will be too busy assembling centerpieces and party bags for our princess party on Sunday. Not sure what I was thinking- a house filled with preschoolers, balloons and sugar after a night at the hospital with no sleep. This should be epic. But, “for every storm a rainbow.” Once again, there she is, my rainbow.

If God sends you down a stony path,
may he give you strong shoes.
~Traditional Irish Saying

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