Written Oct 3, 2011

We’ve had so many people tell us, “Well, at least you remember what it’s like to have a baby from raising your daughters.”  Maybe we were too distracted by the dance crazes of the mid 90’s, but we don’t recall a lot of the details of our earlier babies.

Timothy is an active boy.  When awake, his little chicken legs and arms are moving all the time, which makes it fun to slip on a diaper and tougher for the colostomy bag to stay on.  He’s been awake more and more in the past two weeks, and is alert and looks around a lot, like he’s looking for an exit.  His neck is strong and he rears back often when we’re holding him, probably trying to figure out whether we’re his parents or grandparents.

This week we have both a visit from the folks from the school district to begin assessment and occupational therapy, and an appointment at the Down syndrome clinic at Children’s hospital.  These will be nice resources for us, in helping understand where Timothy is developmentally and where we need to focus.

In addition to the cognitive (thinking) challenges, there can be other issues connected to Down syndrome, though we haven’t dealt with much so far.

Still, as someone who is a not very patient and wants to know what we’re facing, it’s hard for me to not worry about the possible scenarios.

I want to know whether he’ll walk and talk and be independent and dislike Ohio State just as much as I do.  But you just can’t know that yet, just like we didn’t and often still don’t know for our two teenagers.

The father of boy with Down syndrome said to me, “I’m probably naïve, but I don’t worry about those things.  I’ll deal with it if it happens.  Otherwise, worrying is just going to mess up enjoying today.”

Simple, but just think — if we’d worried too much with our girls, we might’ve missed the Macarena.

Dancing and grateful,

The Lees

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