My Moments

Moments

1/12/2016

My typical three year old, Nicholas, loves to sing and dance.  I mean, he LOVES to sing and dance… The boy hummed himself to sleep from day one.  If there is a dance party going on in our kitchen, chances are Nick started it.  When he asks me to dance with him, it is very hard to say no.  His joy is infectious.  So, on one particular day, not quite a year ago, when Nick was about two and a half and his brother was about six months old, we had music playing in the kitchen, and Nicholas asked me to pick him up and dance.  As I was holding Nick in my arms and we twirled around, I flashed to the future, to his wedding day, when I may have a Mother/Son dance with him.  My heart warmed at the thought. Then, I glanced at baby Sam in his high chair as he looked on, and it struck me like a dagger to my heart that I may never dance with Sam at his wedding because he may never get married.  You see, because Sam has Down Syndrome.  I buried my face in Nick’s shoulder so he wouldn’t see my tears and ask me why I was sad.  There are moments in our lives that strike us so hard, so forceful, and are so eye-opening, that they throw you.  I felt thrown on the floor and stomped on. 

I call these “my moments,” and I’ve had a few since Sam was born.  These eye-opening moments that, at times, physically hurt.  These sad moments are few and far between, and it’s been a while, but they are so etched in my brain and in my body, I cringe at their memory.    Another one of my moments took place when Sam was a couple months old.  He had a hemangioma on his bum that needed to be evaluated by a plastic surgeon at Boston Children’s Hospital.  Side note, people with DS are at a higher risk of developing childhood leukemia, so with every mark on my child’s body, my mind immediately goes to leukemia.  A hemangioma has nothing to do with cancer, but I must have asked half a dozen professionals if it could possibly be related.  It is not.  Sam was resting cozy against my chest in his sling carrier as I was filled out the paperwork in the waiting room, checking off health information and history.  I breezed through the paperwork.  And then I stopped.  I choked.  I forgot to write “Down Syndrome” and “ASD” (Atrial Septal Defect) in Sam’s paperwork.  I had already blogged about his DS and had typed and read the words numerous times, but hadn’t had to write it down in medical paperwork.  That hurt.  I wept silent tears, turning away from the man sitting two chairs over, hoping he didn’t witness my little break down.  As I passed in the paperwork, I’m sure the receptionist noticed my red eyes, but she kindly did not inquire. 

Our first Christmas party with the Down Syndrome Society was hard.  So many beautiful children and young adults with Down Syndrome, and I was holding newborn baby Sam, looking up to the ceiling to hold in tears.  We were new to this club, and I wasn’t ready to be at that party.  I wasn’t ready to celebrate, and while I smiled and watched Nick dancing with all the other children, I hurt.  I’ve had a handful less invasive moments, ones that are not so etched in my mind.  I try not to compare Sam to typical kids his age, but it’s hard not to see it when there is a delay.  I can honestly say I don’t feel sad when I see these delays because I know Sam will get there in his own time.  When he does achieve those milestones, those moments are pretty incredible.

Sam is nearly 16 months now (how did that happen??), and it has taken me this long to write about these moments that happened when he was a baby.  Clearly, I am an open book, but I hadn’t written about these incidents, I think, because they were too difficult for me to put into words and open those wounds.  I have grieved Down Syndrome.  I am over the grief, and now I celebrate. I am at this party and it's awesome.  Sam is healthy, but more importantly, he is happy.  Things like the new show on A&E “Born This Way,” about young adults with Down Syndrome living and thriving and contributing to society, give me an overwhelming hope for Sam’s future.  He will go to school, he will have a job, he will have friends.  He may even get married. 

Flash forward to a more recent dance party in my kitchen.  Music is playing.  Nick asks me to pick him up and dance.  We are twirling around the kitchen and Nicholas is laughing.  I glance at Sam in his high chair, and he is laughing and clapping, those beautiful almond shaped blue eyes are sparkling.  I pick him up, out of his high chair and the three of us dance.  I’m holding my two joy filled boys, and I flash to a bright and beautiful future.  It’s a pretty amazing moment.