Happy Anniversary to Sophie’s Heart

A couple days ago, the Glo-Worm emerged from the pile. It happens sooner or later with all toys in our house — they show up, poking out from a basket or under the couch. Sophie pressed the worm’s belly, and it a played a song. Instantly, I was in a dark hospital room, pressing that belly and playing that song, soothing a little kid whose chest had just been pried open to expose her heart.

Today is the one-year anniversary of Sophie’s heart surgery. I don’t really think of the other anniversary of the first surgery (she was four months old) since that one didn’t take. A little more than a year ago, on a very hot morning in August, I was turning out of the busy parking lot of Pro’s Ranch Market, balancing a pack of obnoxiously bright cupcakes on the seat next to me, when my cell phone rang.

“Sophie needs open heart surgery again,” Ray said, without pretense. He’d taken her to what had become a routine check up with the cardiologist. Nothing routine this time; Sophie had sprung a leak.

It took a while to get in to see the surgeon (it wasn’t an emergency; Sophie’s got the most common DS heart defect, A/V canal) and by then, we were well into mid-October. The surgeon was kind enought to wait til after Halloween, so Sophie could trick or treat. He’s that kind of guy.

“Do you remember your doctor’s name?” I asked Sophie when I got her up this morning, and told her it was exactly one year since her surgery.

She shook her head.

“Dr. Teodori.”

“Oh! Oh! Dr. Teodori! I love him! I love him so much!” she said, with even more emotion than is typical for Sophie. Dr. Teodori inspires that accross the board, and not just because of his surgical success rate. I’ve never seen such good bedside manner.

And then she started chattering, the thoughts and words barely keeping up with each other. I did hear “apple juice! Apple juice!”

sophie-heart

When we talk about the surgery, which really isn’t often, I remind Sophie that when she woke up, those were her first words: apple juice. She takes medicine twice a day to lower her blood pressure. That, and the scars and the big bump of bone on her chest are reminders. So is the appointment we have with the cardiologist next week, for a check up.

There’s nothing routine about those check ups anymore. Never will be again. Sophie was showing no signs at all that there might a problem, last year. So I wonder all the time: Is her heart okay? Why does she need naps when the other kids don’t? Are those bags under her eyes? Are her hands and feet cold; is her circulation bad?

After we got the news that she’d need more surgery, I looked back and realized that for weeks before that, Sophie had been taking my hand and putting it over her heart, when we cuddled. I wonder now if she knew  something the rest of us didn’t.

If she knows anything this time, she’s not saying.

I couldn’t find the Glo-Worm this morning, a gift from our dear friend Sawyer, a fourth grader who walks Sophie from the lunch room to the playground almost every day. But here’s our girl, as she was leaving for school.

sophie-heart-anniv

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4 Comments

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4 responses to “Happy Anniversary to Sophie’s Heart

  1. 1L

    Happy Anniversary!

  2. Give me a just a sec to wipe my eyes.
    … Okay.

    What a blessing!

    Lots of blessings this week.

  3. Ryan came over last night for Taco Bell and to rip more music CDs to his Zune. He knows how to log in to his own Windows account, kept separate from mine due to very different musical tastes; he and his mom are into so-called Praise & Worship music. (I call it 7-11 music because one sings 7 words over and over about 11 times, but I digress.)

    Then he ripped them without oversight. Ryan needs help only to scan odd album covers (Hmm. Reminds me of SNL skit, Sean Connery & Jeopardy, “an album cover” = “anal bum cover”, but I digress. Again. I love to digress.).

    Ryan has a good heart, figuratively and literally.

    Some DS folks have some kind of neck vertebra thing, atlanto-axial subluxation, wherein gymnastics or contact sports can be morbidly injurious.

  4. I can relate. We all can feel the pain. It’s sometimes more than bearable. But you’ve done so well to be in peace and love.

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