Wednesday, October 2, 2013

Day 2 of Down Syndrome Awareness Month!

Today I want to talk about fear.  I don't know that I've ever felt as much fear in my life as I have experienced in the past two and a half years.  Actually, I'll go all the way back to the beginning of my pregnancy.

I wasn't particularly worried about my pregnancy, ironically, but there was definitely a lot of fear about many other things.  I've always been a little neurotic so Tom and I were both worried about how I would handle the additional stress and time constraints of a child.  For no particular reason, I had some worries about post-partum depression.  I worried I wouldn't be able to lose the weight I gained after having just come off being in the best shape of my life for my competition.  I worried about how a baby would impact our finances, our time together, and endless other things.  And of course I worried about the actual process of childbirth.

Tera herself really only gave me one scare and that was around eleven weeks.  My doctor had told me I could maybe expect to hear a heartbeat at one of my visits and when he couldn't hear it, despite the fact that he told me it might be early, I freaked out.  I was so worried something was wrong that I scheduled my next appointment a week earlier than I needed to.  When I heard that insanely fast little heartbeat, I felt myself finally breathe again.  As I walked out of my doctor's office that day, I told Tera, out loud, that she should never scare me like that again.  If I had only known...

Fast forward several months.  I fly through a crazy fast delivery and I'm holding our sweet, beautiful baby girl when the doctor walks in, alone, and closes the door behind him.  He sits down in front of us and tells us that he has something he needs to talk to us about.  I think my heart probably dropped right then and there.  He told us very matter of factly that he suspected that Tera had Down Syndrome.  I felt I was fairly knowledgeable on the subject of Down Syndrome and what I knew, scared me.  My mind raced with all the things she wouldn't be able to do and the tears started.

My first thoughts unfortunately consisted of things like her never being able to drive, never getting married or having a family, struggling with everything for the rest of her life, and countless other things I don't often think of anymore.  When the doctor left, we held our brand new baby girl and we cried.

That was just the beginning of my fears.  As the day went on we came to find out our daughter had holes in her heart, was showing signs of strep, was struggling to eat, and would more than likely be kept in the hospital beyond my release.  As the week went on we learned more and more about what life would be like for us.  An overwhelming amount of information, emerging medical issues, and a situation we had not been prepared to deal with were thrust upon us.

Becoming a new parent can be scary for anybody, but add to that the stress of having a child with special needs and special medical conditions and fear doesn't really begin to explain it.  But as the months and years have passed, we've dealt with most of the those initial fears.  There are definitely still times when the fear of the unknown hits me out of nowhere and I have to remind myself of all the things she's already accomplished.  Now the fears mostly center around health concerns and normal parent issues.  I want her to be safe and healthy and happy and loved and taken care of.

It still scares me that the first two and a half years have gone by so fast.  I want to see what she'll become and at the same time I just want to hold onto the little person she is now.  I worry about the people that won't treat her well and kids that may tease her.  I worry about the decisions we'll have to make regarding her education and whether we'll make the right ones.  I don't want to underestimate her, but I want her to be successful and in an environment that allows that.

I know parents really never stop worrying about their kids.  I wish worrying about her was the only thing I had to deal with, but as with everything else, we will try and take it one day at a time.

Down Syndrome Fact:
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. 

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