Monday, October 5, 2015


Since October is Down syndrome awareness month I spend more time thinking about Down syndrome that I do any other time of the year.  Specifically I have been thinking about when we found out Riley would have Down syndrome, his birth and those first weeks, months and year.  The post below from 2009 sums it up well. 

 October 2009
This last week I attended a playgroup with a handful of moms that all have children with Down syndrome.  We all have drastically different stories,  personality,  faith and kiddos.  We were all chit chatting and sharing our stories and stories of our kiddos and one of the mom's busts out with  "I wasn't disappointed that my baby has Down syndrome....  were you?"  Well I immediately get defensive and I'm not even sure why.  I guess the adjective disappointed is one I never want to use when I speak of either of my kids.  I've used a million other adjectives to describe how I felt but I guess scared and angry have topped the list.  I'm not really sure why those adjectives seem any better to me, but I've been thinking a lot about this conversation, my reaction and the word disappointed. defines the word disappointed as-  To fail to satisfy the hope, desire, or expectation of.
So I guess the answer really is Yes,  I was totally and completely disappointed when I learned that my unborn son would have Down syndrome.  I had a picture in my mind of a sibling for Rex that he would be friends, playmates and confidants with as he grew older.  A family that he would have long after Justin and I were gone from this world.  Rex was 4 when I pregnant with Riley and I pictured another little boy running, wrestling and playing catch with his dad. 

I can honestly say that before Riley I new no children with Down syndrome and had very very  limited experience with anyone that had disabilities.  So, when i was told that Riley would have down syndrome I didn't know what to expect and with the unknown comes fear.  Throw in some additional ultrasounds and a Dr with zero bed side manner or good sense and I had some huge fears of health issues way more scary than Down syndrome.  All I could think of was that while we thought Rex would be gaining a sibling really he gained a life long responsibility. 

Fast forward to Riley's birth and all of the scary health issues were erased and we had this beautiful baby and it was so much easier to picture all of the things that Riley would be able to do.  He would be able to run and play and giggle with Rex.  (little did I realize just how much wrestling there would be)  In that instant when he arrived into the world Riley erased my disappointment.  I do still have a healthy dose of fear but it is a different type of fear. 

I have fears for both of my boys.  I worry about how the world will see them, and if they will be accepted for who they are.  I'm pretty sure that every mom worries about her boys.    I worry that they won't listen to the lessons that we try to teach them...  will they be respectful,  will they behave at school, will they remember to put on clean underwear and socks if I don't tell them every single day,   will they love to read or just love kicking the soccer ball......see the list goes on and on.  Wow the being a mom stuff is hard work. 

Fast forward to October 2015 and it is amazing how when you talk to someone about Down syndrome it can take you back to those first moments with a clarity that is stunning while at the same time you can put the filter of almost 9 years of being Riley's mom over it and becomes more clear.

As parents we all have our fears matter how many chromosomes our children have.   With each stage that both of the boys get to we set one set of concerns behind us and hit another set head on.   The older Riley gets the less those original hurts seem to burn but there are certainly lots of extra concerns that just never go away.   

 You'll have to come back and keep reading this month as I jump into those but for now enjoy these. 
Riley and Roxy October 2015

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