Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Annual Check Up and My Hat Off to Gilda Radner

Charlotte had her 8 year old check up last week. It was no surprise that she had gotten taller (54.75 inches) and heavier (around 60 lbs.).

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But, there were surprises and it was all I could to do hold back tears in front of Charlotte. It seems like we’ve kind of glided from the STAR-band (2006) and second heart surgery (2007)through first grade, able to pretend that she’s just a regular kid. But, truth is, she’s not. She’s our special, quirky, bright, medically fragile kid. She is covered with physical scars and may bear more psychological scars than are apparent.

It’s Always Something

Gilda Radner wrote that cancer gave her “membership to an elite club I’d rather not belong to.” Sometimes I feel like that as the parent of a medically fragile child. She is less fragile than many kids. The “fragile” refers not to her physical state as to the potential for medical upheavals in her life, I think.

Most days, the club I belong to is the mother’s club. It’s not so elite. As my friend Kath has quipped, it is rather extraordinary that you need a license to drive, but anyone can be a parent, whether they enter the pact with forethought or not.

Radner’s It’s Always Something (1989), the tale of her struggle as a strong, brave, funny woman to enjoy life despite a terminal cancer diagnosis is one of the best memoirs I’ve ever read. I remember buying the hardcover as a college student (who did that?!) and staying up all night to finish it.  It is a book I refuse to cull from my shelves and imagine reading again. I will, as soon as I can get it out of its box.

In the meantime, we’re living it, sort of. We are reminded that we belong to this club of parents with medically fragile kids. Kids whose early life diagnoses can rear their head somehow at any point, or seem to at least.

Charlotte has a curvature in her lower spine which I have noticed for the past several months. Scoliosis is, I know, common and can occur in the spines of kids who are not medically fragile. I get that.  I also get that we’re no longer in the world of Judy Blume’s Deenie and that if it is scoliosis, it may not necessarily mean surgery or a back brace. But I can’t help thinking of that.

You see, for me this is just more upon more. It’s one more doctor–Charlotte understood that immediately and wasn’t happy about that. Maybe one more regular therapy appointment–she understood that, too, and immediately began worrying about having OT, PT, Hebrew school, and piano. “Mommy,” she said, “when will I play? How can I do any other after school clubs?” I had to tell her take a deep breath and that we’d figure it out once we see the orthopedist.

To top that off, at the mere mention of the possibility of an optional vaccine, Charlotte had what I call a “frustration fit” and you, dear reader, might call a temper tantrum. Charlotte was not “terrible two.” And she wasn’t a “frightening four.” But the past several months have been challenging, with more frequent meltdowns, typically related to having to follow adult instructions or white coat anxiety. The upshot of her meltdown at the doctor’s office is a follow up with a child psychologist. She understood that, too, and later told me, “She’ll just want me to talk about my feelings [how did Charlotte know that?] and that’s a waste of time. I feel fine. I just don’t like shots and don’t like to be told what to do.”

Now we wait for further diagnoses and follow up plans. And we try, in Ms. Radner’s honor and memory, to enjoy every minute as we wait. We know how lucky we are that Charlotte is as healthy as she is and that we are so lucky to have her with us. But I can’t help feeling like I want to bang my head on a wall or hide under a blanket for a week.

Written in honor of Brandon and Jeremy and in memory of Jeremy Roignant


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Reflux Chronicle: Another Hurdle Cleared

Charlotte had a terrible stomach bug this weekend. I’ll spare you the details and say only that it came on quite suddenly and only lasted for 12 hours. By Sunday morning she was feeling well enough to grab a banana out of my friend Jackie’s hand and eat about 2 inches of it. Today she ate nearly 600 calories of solid food and drank all of her Pediasure.

We had our follow up appointment with Dr. Newport today, checking in on weight to make sure that Charlotte had bounced back from last month’s atypical pneumonia.

Charlotte weighed in at 31.5 lbs or 14.2 kilos. She’s down only about .25 lbs. Since we weighed her today in only a diaper and we then realized that last time we weighed her fully clothed, and since she just had a tummy bug, Dr. Newport was not worried at all.

There is nothing worse than seeing your normally happy, bouncy toddler simply sit on the floor and stare into space like Charlotte did on Saturday afternoon. But, if she had to be sick, I’m grateful that we could learn from it how well she’s doing without her tube!