Monday, September 2, 2013

Down Syndrome? Oh that's right.

There aren't many weekends when I can say that I was able to see ALL of my sisters and my sweet little nieces twice, but I can this weekend.  Tera got a lot of visiting in and was finally able to break through her apprehension of my sister's boyfriend, which we've been working on every time he visits.  We had planned a visit to the zoo with my sister Lindsay and her boyfriend Josh so Josh could finally see something other than the town in which we live when they come up from North Carolina, but the weather wasn't cooperating so we ended up at the Shedd Aquarium instead.  We got about an hour in before Tera was running out of patience at not being allowed to run free so we decided to head out.  And I have to give Tom credit for being amazing again.  He was the one who decided to head into the city instead of taking our chances with what would have ended up as a miserably wet experience at the zoo.  Not only did he suggest one of the museums or the aquarium, but then figured we could head back up through downtown and part of the North Shore to give Josh more of the "Chicago" experience despite the rapidly declining weather.  So we left the aquarium and headed up Michigan Avenue, cut over to Lake Shore Drive, then over to Sheridan and up through part of Evanston.  A lot of driving to be sure, but at least it was something to do.

And here's where I change gears.  Yesterday we decided that it would be easier to get Tera to nap if we took her for a walk to get her to fall asleep.  Tom went with me for most of it and then headed home as I headed around the block to give her a few extra minutes before I tried to bring her inside.  For some reason, as I walked by myself with her asleep in her stroller, the idea of Down Syndrome hit me.  This happens from time to time for me.  I think about Down Syndrome in some way or another almost every day.  Whether it's the calendar in my classroom, the magnet on my car or in my classroom, a post I see on Facebook, or Tera herself; it crosses my mind probably every day at least once a day.  But it only really hits me every once in a while that it's on my mind because Tera does in fact have Down Syndrome.  I might look at her or think about her and connect the two, but it still only really hits me every once a while that she has a diagnosis.

There are so many aspects of our lives that are affected by DS and it only sometimes hits me as to why.  I'm not actually sure how I feel when I do realize it though.  I guess sometimes I'm sad, sometimes I'm mad, sometimes I wonder why it has to be her, sometimes I'm afraid for how many things are unknown, sometimes I want to cry when I catch people looking at her because I wonder what they're thinking.  

I don't want people to pity her, or us.  I don't know what I want them to think or feel, but I know it's not that.  I know that we came to accept her diagnosis early on, but there are still times when I have to deal with the reality of what DS means.  But even though it's hard to remember what life before DS was, I know that we're still early on in our journey with Tera and that means I don't still always feel comfortable or sure with how I want people to act or react.  I know there are times when I want people to just think she is just like any other typical kid and there are time when I want everyone to know just how incredibly extraordinary she is.

For all my uncertainties, here's what I do know.  I know that Tera can change your day with her smile.  I know that she has probably inspired more people to be better in her two and a half years of life than I have in my eleven years of teaching.  I know that she is braver than almost anyone I've met.  I know that she has made me a good mom and a better person.  I know that she loves with every fiber in her body.  I know that she will comfort you even when she is upset.  I know that she adores her baby cousins and wants nothing more than to be able to hold them.  I know she will grow up to be even more amazing than I can imagine right now and that she will change people.  And I know that I love her more and more every day that I get to spend with her.  

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