A Heart, Broken

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My daughter was born with a hole in her heart.

More specifically, she was born with Atrial Septal Defect (ASD), a hole between the upper champers of her heart. She also had Patent Ductus Arteriosus (PDA), where the tube that circumvents the irrelevant prenatal lungs remains open after birth.

Both problems — along with a slew of others — are very common in babies with Down syndrome.

We were lucky though. Her heart problems cleared up on their own — the PDA within months, and the ASD before she turned five. She had a followup echocardiogram when she turned twelve, and she was officially declared no longer a cardio patient.

This week she had her first well-child checkup since moving to Canada (Hurrah!!! Our children actually have a doctor now! A wonderful doctor!!!).

Unfortunately, the doctor heard something not quite right in her heart. He referred her to a cardiologist for an echo.

*sigh*

Yep. She’s a cardio patient again.

I know this development is frightening. I know it means we could be dealing with open heart surgery after all, like so many of our friends. I know it would be normal and completely understandable for me to be in tatters emotionally.

But I’m not. I’ve been through so much stress in the past four years or so, and I’m dealing with a couple of pretty major issues in my family of origin right now.

I just don’t have any energy to expend on things that might happen. When the time comes, if there’s a need for panic and worry, I’ll panic and worry then.

Thing is … I’ve never felt she was ours, the way a typical child is. I’ve always felt she was only on loan to us.

There are sooo many things that can go wrong with Down syndrome. Children with Down syndrome are eleven times more likely to get leukemia, for instance (though we’re past the age where that’s most likely).

Even if she has a long, healthy life, the average lifespan for a person with Down syndrome is only fifty years — and that’s if they survive the first ten.

Yes, I was a geriatric mother (God, I hate that phrase!), but the women in my family tend to live a long time, and I’ll only be eighty-five when she turns fifty. So I’ve known since she was a few months old that I will probably outlive her.

The truth is, our children are always only on loan in reality. We all know logically that any one — including our children — could die at any moment, but we don’t feel it. In fact, when a parent does lose a child, you’ll hear people say it’s not supposed to happen that way. Children are supposed to outlive their parents!

But that sort of magical thinking is a luxury not available to parents with medically fragile children. We live with the knowledge that every single day with the child is a precious gift of grace.

That knowledge is one of the greatest gifts our “imperfect” children bring.

“There is a crack in everything,” Leonard Cohen sings. “That’s how the light gets in.”

It is in the brokenness — the hole I’m picturing in my daughter’s heart — that I can see the sweetness in every ordinary day, even in the days that weigh heavy.

“Shatter yourself in a thousand little pieces, and reassemble them,” Rebelle Society posted today in an entry called Solace for the Broken: The Power of Cracks and Holes. “We are more beautiful for being broken.”

When my daughter was born, I accepted the burden of knowing I would outlive her. Today I choose again to break my own heart open wide.

I choose to let the light in.

 

One Response to “A Heart, Broken”

  1. Grandma Says:

    This is a bit sad. Please keep us informed. We love her so much, and you TOO!

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