Wednesday, May 23, 2012

Educating

I wrote my first post a little over a year ago (May 20, 2011) and when I embarked on this little experiment, I had several goals in mind.  First and foremost was to use it as somewhat of a live journal; a place for me to express my thoughts.  Second, it was to share my experiences as a new mom to a beautiful little girl with Down Syndrome.  And finally, it was to educate people about Down Syndrome.  After doing the 31 for 21 blogging challenge this past October for Down Syndrome Awareness month, the amount of people following my blog really increased and I've had so many people tell me they've learned so many things they didn't know about Down Syndrome before.  All the support I've received has not only made writing more enjoyable, it's also encouraged me to keep spreading awareness and information about Down Syndrome and what life is like with it in our family. 

Today one of my students asked about how Tera was doing.  As I updated him a little bit the conversation turned towards future children.  He asked me if we were planning on having any more and I shared that we were in fact planning on it, but that so much of what goes on with Tera has affected the timing of when that might happen.  We began talking about prenatal testing and he and another student asked if we knew before Tera was born and whether we would do testing with any future children.  My response is always the same when this question comes up; I would never change the decision we made to not know with Tera, I'm grateful everyday I didn't know and that I was able to enjoy my pregnancy without any undue stress.  However, I couldn't do it again; I just can't go through that surprise again and knowing what I know now, I would be incredibly worried the whole time and I would be putting myself and a baby under too much stress.  Finally, he asked a very difficult question for him.  After some stumbling and hemming and hawing, he asked if I hoped my next child is "normal".  He was very, very concerned the whole time about how to phrase it right and I explained that I'm not easily offended and just to ask it the best he could.  My explanation was this: while I would never change what Tera is now, if I could remove that extra chromosome from her body and make her life easier and more comfortable, I would.  It's true that any child can experience hardship and struggle, but Down Syndrome makes that far more likely than the average child.  There are many children who's looks make them stand out, but Tera will more than likely always be recognized as having Down Syndrome.  So when asked this question, I have to honestly answer that given the choice, I would not want Tera to have DS.  But she will overcome her struggles and will always be supported in them, her hardships will make her a strong woman, and her beauty goes without saying. 

After school I had a colleague ask about her and when I gave her some of the updates she told me that she had an aunt that had DS and she just never knew that much about it.  Once again, Tera educates. 

I read a post today in my forum asking people to basically stop being so sensitive about other people's comments to them regarding their child with DS.  It's something that I've written about before and my perspective is different from some people's but in this case, I was in complete agreement.  Many people, ourselves as parents pre-DS child included, didn't know before what we know now.  Many of us may have or have made similar comments that the DS community may find insulting or insensitive, but we didn't know any better.  As a teacher I have access to around 150 developing minds a year and that's 150 more people a year that will know up and down sides to DS.  With any luck the next generation of people won't make those comments that may be perceived as insensitive and it will be because they are educated and have a personal connection, and of course Tera will have been a part of that. 






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