Every once in a while something happens that makes me pause and actually say out loud: “Rowenna has Down syndrome.”

It’s not that I don’t realize she has it. It’s that day to day, it’s so inconsequential I rarely have to actively think about it.

Yesterday I had one of those moments. For the last week or so, Rowenna had a drastic change in sleeping habits. My girl went from fighting every nap so she could stay awake and play to desperately clinging to me and napping 6-8 hours a day on top of 10 hours of sleep at night. She looked beat. Done in. Dark circles under her eyes.

We went to playgroup, and several of the regulars mentioned that she just looked off. Her personality was dulled, and there was no twinkle to her. In fact, she spent the majority of playgroup staring off into space. She was completely zoned out.

Frankly, it scared the daylights out of me. Rowenna is generally a vibrant soul whose main fault is her completely unflappable zest for life – a zest I often experience at 11pm when she ought to be sleeping.

So I barely slept that night or the night after (doctor was, of course, out of town…babies only get sick when the doctor is out of town or at 3pm on Fridays). There is something about Down syndrome that lurks in the back of my mind. It’s usually silent, but it had started to growl a bit. I was worried it might be cancer. Kids with Down syndrome are more likely to get a certain kind of cancer than their typical peers, and that little statistic was pacing back and forth in my mind.

I called the doctor yesterday morning and said I needed to bring Rowenna in for my own peace of mind. Our doctor is amazing and opened a spot in her schedule immediately. She agreed that Rowenna just wasn’t herself and  ordered a battery of lab work.

And the good news is Rowenna does not have cancer. The other news is that Rowenna has hypothyroidism which is quite common in individuals with Down syndrome.

So there it was, my little reminder. The worry about cancer. The diagnosis of hypothyroidism. A glimmer of frustration that I even had to consider cancer an option at all, a flash of sadness that now we have one more thing to think about and monitor and medicate. Rowenna has Down syndrome.

Hypothyroidism is easily treated with medication. For now, it’s just half a pill which we crush and put into her food. And after two doses she is already starting to perk up a bit so now it’s just a matter of making sure everything is in balance.

Riding the wave of that reminder, I also did something that I’ve been putting off for 10 months. I brought out the pictures I took of her recovery from open heart surgery and put them in her scrapbook. Nothing fancy. Nothing detailed. I can’t believe how hard it was to look at those pictures. To see my precious girl hooked up to all those tubes and wires, pale and puffy…I was swiftly reminded of why those pictures had been sitting on my desk for so long. But the more I looked, the more I saw my girl underneath all the tubes. There’s a little twinkle in her eye and a hint of a smile. She’s a tough cookie.

My unflappable little girl.

Here she is at the kiddie pool. Looking forward to these big smiles returning as her medication kicks in!

4 responses to this post.

  1. I, too am terrified of cancer. I try not to think of it much, but it’s there, just like a shadow. I haven’t taken Moxie in for the hypothyrodism tests – the doctor ordered it last week or so, just to be sure.
    Very glad to hear Rowenna’s back to sparkly – and I meant to comment with your brilliant last post as well – I really loved it. So well put… as always


  2. Posted by Marita on July 24, 2011 at 12:07 pm

    I am so sorry that Ro hasn’t been well, and that you’ve had so much stress about it. I am sending prayers and best wishes that she’ll be feeling better soon, and keeping you awake at nights only because life is sometimes too exciting for babies to go to sleep when their mama wants them too.

    Love you.


  3. Oh! I’m sorry that she’s been feeling under the weather! Hope she’s feeling better already. See you soon!


  4. Glad you got such a swift diagnosis! They say that it’s not a matter of “if” an individual with Ds has a thyroid issue, but “when.” We haven’t had to go down that road yet, but I know plenty who have, and they all say the same thing – the medication works quickly and keeps things going smoothly!

    I know what you mean about the OHS pics. I still get a twinge when I look at Sammi’s, but I have passed them along to many people who are facing the same surgery, as it was those same pics of other babies post-surgery that helped me to be well-prepared for what I would see with my own.


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