Thursday, May 31, 2012

At the beginning and now

The great part about final exams as a math teacher, is that the grading is pretty quick and I actually have some free time on my hands while they are testing.  This has given me the unique opportunity to actually read through some articles I found online.  If you do a search on articles regarding Down Syndrome, you’ll most likely find one common theme and that is the recent increased use of a prenatal test that can confirm whether a child has DS much earlier in a woman’s pregnancy than before and without the risk of an invasive procedure.  This has been the subject of much debate in the DS community in the past year because many parents feel that the test will decrease the number of children being born with DS because their parents will choose to abort when they find out.  It’s a highly controversial topic that I have differing opinions on, but it’s not really the point of what I was reading about.  What I was more focused on was how the parents in the articles shared their initial fears and worries and how many of those things have become so much less important to them as time has gone by and their children have grown. 

I will and have admitted that Tom and I came to grips with Tera’s diagnosis much quicker than some other parents do and that’s not a sign of anything other than that’s just who we are as a couple.  We deal with things head on and know that as a couple, we can handle anything.  We also have an incredible support system that made that acceptance exponentially easier.  But that’s not to say there weren’t hours and days of tears on our part at the beginning.  Those first few hours were some of the hardest in my life because we had chosen not to say anything yet and while we were both elated about the birth of our beautiful girl, in the back of our minds both of us couldn’t stop thinking about what we weren’t sharing with our family and friends on what should have been one of the happiest days of our lives. 
Shortly after Tera was born, I received a book called “Gifts” and I started reading through it.  It was short little stories shared by parents of children with DS and it varied from new moms to experienced moms and young babies to grown adults.  Most of it was very positive, but there were also things I read that I hadn’t considered even worrying about.  I remember very clearly the day I realized there was a very good chance Tera would never be a mom.  Also, the idea that she wouldn’t drive hadn’t occurred to me.  What also hadn’t occurred to me was that she would be such an inspiration to so many people.  That wasn’t one of the things that had gone through my head on that first day that I so clearly understand now.   I didn’t know on that first day that people would stop us constantly in stores to tell us how adorable she is.  Or that I could possible love her as much as I do.

However, there are still days when I know how much it sucks that she has it.  When I spend hours trying to schedule her therapies for the month; when she’s at the doctor every week for a month for a different reason; when I feel guilty for not remembering to put her hip helpers on in the morning; when other kids her age are doing things she’s months away from, and sometimes when I realize that part of the reason people are stopping us is because she’s different (but that’s not frequent because she is way too cute to not comment on).  There are many days when I wonder what she’ll be able to do in school, if she’ll find love, if she’ll get teased or taken advantage of, if she’ll live with us forever, and even how we’ll manage another child in the future knowing she’s a little bit more work. 
But even knowing all of what I know and not knowing so much more than that, I wouldn’t change who she is or how we handled anything.  I wouldn’t go back and find out and I have no complaints about the way we were told, how people reacted, or how she was treated and more than anything, I hope that those expecting parents of children with DS can have that same positive experience.  It’s really not the end of the world, it’s just the beginning of a world you didn’t know about. 

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