happy world down syndrome day

Friday, March 21, 2014

Happy World Down Syndrome Day!  Just over six years ago I rarely thought about Down syndrome, I didn't know anyone with Down syndrome and if I did see someone, I never went out of my way to interact with them.  I was uninformed and scared.  Today it's different, I'm a new person and a little bit of an expert when it comes to Down syndrome!  Beckett has changed everything, in a good way.

I often wonder if some people think I'm full of it when I say that Beckett has changed our lives for the better. In my experience, I was told so many negative things about Down syndrome and constantly reminded of what Beckett wouldn't do...of course I was sad in those early days.  Actually, I was terrified, and why wouldn't I be?  I was bombarded with so much unnecessary garbage, all the photos I looked at of children with Down syndrome in pamphlets were outdated and unflattering. I get it, Beckett won't drive, have children, live on his own - blah, blah, blah.  When people heard of Beckett's birth most were inclined to say "sorry" instead of "congratulations"...there is nothing to be sorry for, we are the lucky ones. We really are.

I can't tell you how many new parents I have spoken to over the past six years, honestly I have lost count. I have talked to women in their hospital beds holding their hours old baby, women who have just found out they are carrying a baby with Down syndrome, women crying because their husbands had one foot out the door....you name the situation - I have talked to them.  I tell them all the same thing...it's going to be okay - I promise.  

It will be okay and I really do promise. Down syndrome does not cross our minds on a daily basis, yes Beckett is a slower to develop when it comes to speech and toilet training and a few other things. We have had more appointments for this sweet boy than we ever imagined but we're used to it.  We know what it's like to be on a wait list, and I'm clear on what it means to be an advocate.  We can't imagine life without his bright smile (toothless right now), his hearty laugh and his charismatic glow.  Beckett is empathetic, smart and ambitious. We love him so much our hearts could seriously burst. 

Some may look at Beckett or another child with Down syndrome and think they are not perfect, they are flawed.  Here's a news flash, perfect doesn't exist and even if it did - how terribly boring.  If you are looking for perfect, you will be looking for a long time. What a shame to miss the real beauty in life, we are all unique - we all have a story to share.

It really would have been nice if in those early days someone told me all the wonderful things Beckett will do and what an amazing person he will become. I get why 90% of women who find out they are carrying a baby with Down syndrome terminate the pregnancy (this number is widely reported), there is so much negativity and fear. 

It's 2014 and we have come a long way. We don't throw a child with Down syndrome into an institution anymore (at least not where I live) - although it wasn't long ago in Canada that we did. A child that is loved and nurtured like their typical siblings thrives.  I find at times there is still a bit of negativity when meeting with some health care professionals, we have crossed paths with a few who are stuck in the sixties - the good news is, we just move on and find someone new.  We find someone who sees what we see, a beautiful, charming, bright boy....who happens to have an extra chromosome.   

Of course there are challenges, there always are - with every child.  I'll never forget our first meeting with our Geneticist, he said to me "Tamara, in the grand scheme of things Down syndrome is not a big deal" - it was to me and I was very confused by his comment.  I get it now, compared to the thousands of horrific diseases and challenges a person can have - Down syndrome is not so bad.  He was being kind and trying to let me know that we were going to be fine and we are. 

So today on March 21st (everyday for our family) we celebrate that extra chromosome with World Down Syndrome Day, a day to raise awareness of what Down syndrome is, what it means to have Down syndrome and most importantly - how people with Down syndrome play a vital role in our lives and communities.  Next time you see someone with Down syndrome say hello, I guarantee they will say hello back and smile. 

For more information on World Down Syndrome Day please click here.


Clara said...

Hi Tamara,
Well said. I couldn't agree with you more. No-one is perfect and that's a good thing. People like Beckett add so much colour to our world; isn't that grand! Thank you for being a ray of light for families facing this new journey. Your son is a beautiful soul...keep letting him share his truth.

Paul Quinn said...

Thanks for helping spread awareness, Tamara! There are times when those innocent children get oppressed, due to a condition they have. It will surely help more people have a better understanding about Down Syndrome if they were able to read this post. It can be very helpful to other parents as well, since they would know there are people out there who understand their situation.

Paul Quinn @ MedCare Pediatric