After Down Syndrome

  

Everyone has at least one day in their lives that they could call “life changing”. When applied to my life there are a few moments that come to mind; high school graduation, my engagement and subsequent wedding, the night we found out we were expecting our first child, her birth, the day I found out we were expecting again.  I can tell you the month date and year that all of those things occurred, they’re important moments, monumental moments, moments that changed the course of my and then my husband’s life.  One thing that they all have in common is the joy that came with these special moments and the tears shed by me or others that were looking on with love and pride.

But there is another moment, one that will be with me until the end of my days.  It’s a moment that I’m not proud of, a moment full of anger and hate and tears.  Three years ago today, I was blissfully unaware that I was about to add another “life changing” moment to my list.  I had no idea that less than 24 hours from now, I would be given news that would expose my truest of feelings, and leave me shaken, ashamed and confused.

 When I think about it, I don’t really remember much about March 20th, 2012; it wasn’t anymore special to me than any other day.  I couldn’t tell you what I had for breakfast, lunch or dinner.  I couldn’t tell you what I wore, if I was at work or home, if I did anything special with my spouse or daughter.  I’m sure I was happy, or as happy as a pregnant lady chasing a toddler could be.  We had some scary news earlier in the pregnancy, that had seemed to resolve itself, and although I knew the results for our amniocentesis would be in soon, I wasn’t too concerned.

  

And then the next day came.  I remember going to work and having a fairly pleasant day in Triage, I chatted with friends, very few knew that we had an amnio, so it wasn’t on the forefront of my mind.  As I was leaving I checked my voicemail, there was a message from our perinatologist to call him back; our results were in.  So I did just that.  I called him back, and then March 21stwas added to my list of life changing days.  It wasn’t a happy occasion; the tears that were shed were not ones of pride, joy, or love. 

I can sometimes still feel fear and confusion that I felt after hearing the Doctor utter two little words “Down syndrome”.  I can still feel the tears that rushed down, soaking my steering wheel and t-shirt.  I can still picture the confused look on the old man’s face, who tapped on my window to check on me.  I can still hear the three words I shouted in anger at God as I pulled out of the parking lot “I Hate You”.  And I can still hear the thoughts echoing in my head about my unborn son, “I Don’t Want You”. 

As I said, it wasn’t a moment that I remember proudly.  My initial reactions left me feeling guilty and angry at myself.   I went home that night, kissed my sleeping daughter and changed into my pajamas.  My in-laws came over to discuss our results.  I ate cold Ramen noodles.  I had told my mother in law, “I like them cold”, when she urged me to eat them, I didn’t want to tell her that I had no desire to eat anything.  I cried some more and then went to sleep. And then it wasn’t the 21st anymore.

  

Over the following weeks and months I learned as much as I could about life with a child with Down syndrome.   I prayed.  A lot.  I forgave myself.  My love for Gabe grew bigger and bigger, just like my belly, until it felt like my tummy and heart couldn’t expand any further.  Then Gabe came and slipped seamlessly into our lives; Mommy, Daddy, Daughter and Son; our perfect family.   I like to think of the days before Gabe as the days “Before Down Syndrome”.

Those were the days before words like chromosomes, trisomy, Down syndrome, low tone, therapy, advocacy or acceptance were part of my every day vocabulary.  The days before I understood what it meant to use people first language. They were the days before I felt like I understood the meaning of true and unconditional love. The days before I had friends, best friends, that spanned the globe, before I had the confidence to stand up for my children’s needs and before I knew what it meant to take a time line, throw it out the window and be okay with it.  Those were the days before I fell in love with a blue eyed boy, before I knew how wonderful, amazing, challenging and perfect it was to have a child with Down syndrome. 

I wouldn’t give them up for anything, and even though sometimes I miss the simplicity of them, I wouldn’t give up a single day that has came After Down Syndrome either.

   


4 thoughts on “After Down Syndrome

  1. How incredibly awesome that this particular “life Changing Moment” came on 3-21…World Down syndrome Day. You didn’t know it at the time, but God had a plan and now you can associate that day with the awesome advances in Awareness that have taken place in the world. God Bless you for sharing this story. Mine is quite the opposite…no amnio, and a sense of calm and “aha” as it all fell into place as to why I was “chosen” to be Ella’s mommy. It’s a long story but starting in grade school in the only integrated school with special ed kids in the 1960’s, and later in high school when my mom had my brother with Ds and later in college where I majored in Special Ed…it all lead to June 7, 2002 when Ella Grace Rohde came into the world and my heart. <<>>

  2. As a new mom to a beautiful daughter who also has down syndrome, thank you for sharing your experience. It is soothing to see my feelings reflected in your words, both the joy and the difficulty. Lots of love to you!

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