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Oct 28 2013

Getting Angry with God Over My Daughter’s Rare Disease

By at 12:29 pm

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On July 16th, we (OK…my wife) gave birth to our second daughter.

Six weeks early.

By emergency C-section.

The day after our 8-year-old returned from a month-long motor home road trip with Bubbe, Grandpa, and the cousins.

And that was the easy part.

Her name (the daughter, not the wife) is Eliana Tova.  The common translation of Eliana is “God has answered,” and Tova translates as “good.”

We were attracted to the name in part because of the 8-year gap between our children.  Suffice it to say that the gap in time wasn’t voluntary, so we were grateful that God had, it seemed, answered us with something good. Or had He?

At about 20 weeks gestation we learned via ultrasound that Eliana had a serious heart defect and wouldn’t live without having surgery soon after she was born. The doctors laid out a plan, and at 2 days of life our little preemie went in for a successful surgery.

And that was still the easy part, because things were good when Eliana merely had a life-threatening heart condition.

At about 4 weeks of age, after her kidney function had slowly declined, she was faced with almost total kidney failure. So now we had another life or death situation: either put her on dialysis for the next two years or so in the hopes of getting her to the point where they can do a transplant, or just let her go quietly.

We met with our rabbi the day we needed to inform the doctors of our decision. He asked: “Are you angry with God? It’s alright, because the God I know can take it.”

I hope the rabbi was right, ‘cause you can bet I was angry. Every time I heard someone say something like “it’s all part of His plan” or “it was just meant to be” I growled a little bit inside. With everything else going on in the world, I was supposed to take solace in the idea that God looked down one day and said, “Here’s an idea–let’s screw with THEM!”

After eight years of waiting, God had answered alright, and I wasn’t taking it well.

But stick with me, ‘cause it gets better.

When the nephrologists (kidney doctors) couldn’t find an easy-to-explain reason for her nephrotic syndrome (kidney failure) they sent away one last genetic panel looking for a bunch of weird and rare kidney conditions.

And as it turns out, she has one of them–a condition that’s known to have been diagnosed only about 200-250 times since it was first described in the literature in the late 1960s.  (I’m allowed to use phrases like “described in the literature” now that I have a child who will most likely end up being “described in the literature.”) Great.

So am I still angry now, three months later?

Well… Eliana’s already had a total of five operations (one for her heart, two to place “permanent” catheters for dialysis and IV fluids, and two more to remove and replace said permanent catheters), and she’ll need several more over the next few years. Aside from the operations, the doctors have said she’ll probably be admitted to the hospital at least a few times to straighten out treatment hiccups and various infections during that time. Those things certainly don’t make me happy.

And I’m more than a little peeved that my child’s life depends on hooking her to machines 12 hours a day, every day, until she can grow large enough for a transplant, while fearing possible infections at every turn.

But then I stop stewing about that stuff and look at Eliana and damn, is she one cute baby–with more fight in her than any 10 people I know. She’s sailed through the operations with flying colors, she’s already overcome her first infection, and she’s adapted well to the dialysis regimen, so what in the heck am I griping about?

At the end of the day it doesn’t matter whether I’m angry at God. What matters is that we–Mom, Dad, and Big Sister–stop thinking about the past and worrying about the future so we can concentrate on kicking down doors and moving Eliana forward just a little bit every day until we reach our goal.

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