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Heart Strings

posted Tuesday November 15th, 2011

Some anniversaries you’d rather not remember.

I know Sophie’s second heart surgery was sometime in early November — right around now, in fact — but I don’t recall the exact date. I don’t think about it much, even when I see the several-inch-long “zipper” on her chest, but for some reason, almost every time I pass through our dining-room-turned-playroom I’m reminded of a morning four years ago when I sat with Sophie on the playroom floor and poured olive oil on her hair as I struggled with a week’s worth of hospital bedhead. The rest is foggy. A coping mechanism, I’m sure.

We are reminded in great detail of Sophie’s heart surgery once a year when we take her to the pediatric cardiologist for a check-up. (Last year we graduated from every six months to once a year — a big milestone.) Each fall, I make an appointment; each winter, Ray (usually, he’s the gutsy one) takes her to see the doctor. And he comes home laughing about how the cardiologist always gives the same speech about how “these kids come in here so scrawny!” and reports Sophie’s good health. (Except for the one visit that led to her second surgery; that visit sucked.)

I remember worrying before that second surgery that at 4 years instead of 4 months, Sophie would be aware of what was happening. Not really. Actually, not at all. In fact, until this weekend, I realize now, I’ve never heard her express concern or a real understanding of the whole heart thing, even though she often grabs my hand and places it carefully over the bump where the bones knit back together.

Sunday night, Ray and I were going over the week’s school schedule, and I also mentioned some upcoming appointments and obligations.

“Oh, and the cardiologist,” I said. “Sophie has an appointment Jaunary 4 with Dr. Worsham.”

It was then I noticed that Sophie had walked into the kitchen, and was listening.

“Where do I have to go?” she asked.

“I’ll take you to the heart doctor like I always do,” Ray said, picking her up for a cuddle. “Just so they can check you out and see how you’re doing.”

Sophie stuck her thumb in her mouth.

“I don’t want to go,” she whined, and then she sounded scared. “I don’t want to have heart surgery again.”

I couldn’t meet Ray’s eye. We can’t promise it will never happen again. It might.

And I can’t stack a broken promise on top of a faulty heart.

What would you do?

We changed the subject.

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Tags: Filed under: Down syndrome by Amysilverman

4 Responses to “Heart Strings”

  1. @Amy, you’re my hero. I don’t know what I would have done after I chocked back a few tears and shoved them down a heart that is full beyond bursting.

  2. I agree with Sophie, no more heart surgery seems like the very best option. But I think a very close second would be this: the doctor says Sophie does need another surgery, and Sophie is blessed enough to have a skilled cardiologist who performs the surgery successfully, and then Sophie heals successfully and goes full speed ahead with her busy little girl life.

    So, I guess that is the energy that I would try to communicate with Sophie, on whatever level she can understand it. If further heart surgery could be in her future I would do whatever it takes to never make heart surgery feel like a scary, horrible thing. Nonchalant is the word that comes to mind.

    Maybe you could nonchalantly tell Sophie that as of now there are absolutely no plans for further heart surgery. If however, someday, she might need more of that heart surgery, Mommy & Daddy will be sure to tell you. In the meantime, there are paintbrushes to be purchased and Snow Queen rehearsals to attend.

    Note: You do not have to feel, in any shape or form, relaxed and accepting about the possibility of Sophie needing more heart surgery to pull off this technique. You can actually be an anxious knot of neurosis and spend hours on the phone venting to your sister. I know of what I speak. Kids are gullible.

  3. Noan: No words can express my gratitude for this one. xo

  4. My daughter Brooke has had three open heart surgeries. The last one was december Christmas Eve 2009. She was five years old. She is on her third pacemaker. She is pacemaker dependent. I am believing in God for a miracle for no more surgeries and that her pacemaker leads will not fail! I understand where you are coming from being a parent. It is so difficult to watch our children go through any hurt. God does give us strength and wisdom to talk with our children. I will pray for your little one! God bless yall!

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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