As I mentioned in last week’s Snippets, I’ve decided not to participate in this year’s 31 for 21 Blog Challenge for Down Syndrome Awareness. Part of me isn’t ready to commit to 31 straight days of blogging in the current season of my life, and another part doesn’t think it’s something I should be doing at all. I mean, really – if you’re reading Bringing the Sunshine, you’re already aware, right? 🙂 I have heard from a non-special-needs blogging reader who has decided to participate, however, and I’m thrilled, because she has the opportunity to reach a whole different group of people.
Instead, what I’m doing this October is open up the floor for reader questions. As long as you keep it clean, nothing is off limits – Down syndrome, cerebral palsy, birth stories, parenting, photography. What do you want to know? The first two questions I received (and the answers) are below. I’ll blog the answers to as many as I can – even if it means my Seven Snippets become “Seven Questions” for the next year. 🙂
Q1: I’ve seen you write that Sarah Kate’s muscles are tight due to her CP. Can the muscles ever be stretched out to be more flexible like, for example mine can?
Yes and no.
Stretching is beneficial for kids (and adults) like Sarah Kate who have a spastic form of cerebral palsy (I can’t speak to other types). All of her therapy sessions begin with stretching, and she does it on her own at home, as well – though not as often as she should. Stretching before activity helps her perform better, just like it does with typical people.
On the other hand, cerebral palsy is a neurological condition, not an orthopedic one, though it has an orthopedic impact. Because she has some wires crossed in her brain, her muscles always want to return to their tight state. Some people are able to train their bodies to be so flexible that they can twist themselves into a pretzel shape with ease; Sarah Kate doesn’t have that capability. For her, stretching is a means to help her perform better so that she can strengthen her muscles, and stronger muscles do a better job fighting against the effects of the malfunctioning parts of the brain.
Q2: What is a day in the life of you? What does a typical day look like?
I assume this question was asked in a sincere and thoughtful manner, but in my warped world view I found it HILARIOUS. Then I remembered that I actually wrote a post almost two years ago entitled “A Day in the Life of Andi” and as I reread it, I realized that very little has changed (the kids are just older now). And if you want something a little more recent, try reading “Whose Poo Is This? My Descent Into Madness” from this past May.
But if reading about how I’m teetering dangerously close to the cracking up line isn’t the answer, then perhaps I should supply a serious one. I suspect that my days are similar to those of most moms with young ones, with the exception of adding therapy into the mix. Fortunately, my kids receive regular therapy but it doesn’t consume our waking hours, so the rest of the time is spent incorporating aspects of therapy into our day. It’s really very easy to do and it’s such a commonplace occurrence that I don’t think about it all that much.
A typical Tuesday goes like this: I drop Sarah Kate at school (she only needs help with her shoes when getting ready) and then go have coffee with friends (it’s our regular Tuesday thing) until it’s time for Nathan to go to preschool. After I drop him off, I go run and then return home to shower, check my email, respond to comments, pay the bills, etc. Occasionally I’ll have lunch with Mr. Andi then go pick up Nathan. He’ll nap after that so I spend that time cleaning the house, doing laundry, etc., until Sarah Kate gets home. Then I start dinner and we all head to softball practice. Pretty typical stuff.
I think the biggest thing about my days that sets me apart from other moms is the stuff that I DON’T do. I’m not a rah-rah girl for the PTA. I don’t do lots of fluffy stuff. I don’t volunteer at the school except on extremely rare occasions. I don’t shop. I don’t think there’s anything wrong with any of those things, mind you – I just have a different mindset and worldview, so those things don’t interest me (anymore).
UPDATE: Right after I hit publish, I walked into the living room to find Nathan drinking straight from the syrup bottle. So there’s that…
Next Up: Adoption Prospects, Disability World, and Cameras
Now it’s your turn. What do you want to know?
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