cysticfibrosismom

I'm just a regular mom, figuring out life with my daughter Sophia, who has cystic fibrosis.Take this journey with me.

Watching Children Learn

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My husband and I have always taken our cues from our kids. When Sophia wants to see how a caterpillar turns into a butterfly, we teach her about cocoons and show her a You-Tube video.  When Simon points at a spider and says ‘what’s that’, my husband teaches him about spiders. When they ask why the stars don’t fall out of the sky, then we look it up.

We’ve used the same tactic when it comes to questions about cystic fibrosis. For years Sophia had no questions. It wasn’t until she told me that the reason Simon doesn’t take enzymes is that ‘he’s not big enough’ that I realized we had some educating to do. I explained that his tummy works differently and that he already has those enzymes inside him. Sophia seemed pretty happy with that explanation. I’m still waiting for a question about why Simon doesn’t do chest therapy, even when he has a cold. I’m always telling Sophia that the reason we do it so often when she’s sick is so that it will help her get better sooner. I hope she hasn’t concluded that we’re not that concerned about how long Simon stays sick! I’ll keep an ear out for random comments to that effect…

It’s fascinating to watch little minds at work. When Sophia was learning about boundaries and rules, all we had to do was say ‘no’ once and she’d get it. Simon, on the other hand, likes to constantly experiment to see if the boundary has changed, or at least softened a little since his last exploration of it 5 minutes ago. The word ‘no’ elicits a pause in his activity, a couple of deep breaths, a casual glance around to see if I’m still there, and then a slow reach for the DVD player. As though the boundary is a physical line, and he’s just checking to see where exactly it lies. Fascinating. Frustrating at times, but fascinating.

Sophia loves numbers, likes to count, do simple addition and subtraction. Yesterday she asked for a fish sandwich… which is actually a bun stuffed with goldfish crackers. She requested 65 fish. My husband looked at her, surprised. She usually stays under 39, in her comfort zone. For those who haven’t heard it before, “65 roses” is what many small children called “cystic fibrosis” because it’s easier to say. Jason and I have recently talked about a 65 roses poster that we’re having framed for her room. I’m guessing this is how she got the idea to use the number. Now I’m curious to know if this number has any other meaning for her… i.e. does she think we say 65 roses every time we talk about cystic fibrosis? Her use of the number may just be a casual repetition of a word we’ve said. Or we may be on the verge of another discussion.

Either way, these little forays into a child’s mind keep my days interesting and my love for my children strong.

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One thought on “Watching Children Learn

  1. Love your ability to put observations into words! And love how you’re encouraging Sophia and Simon to love learning!

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