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Down Syndrome Awareness Month: Real Life With a Child With Down Syndrome

Posted Oct 30 2010 12:00am
As Down Syndrome Awareness Month wraps up, I'd like to share some with final thoughts.

A little over two years ago, my son was born with Down syndrome. In the early days and weeks, I was overcome with grief and fear, and even anger. I had already paid my dues in life; what did I do to deserve having a child with a lifelong diagnosis? It felt like a life sentence, and when I thought of the irreversibility of it, the permanence of it, I at times felt like I was physically suffocating.

I and my family have traveled quite a long way over the last couple of years with Finn. In time, the grief and anger evaporated. Sometimes the fear is still there, but I experience moments of fear concerning each of my children when I try to guess at what the future might hold. For the most part, we live in the here and now. We take it as it comes, and so far, it's been a wonderful journey. I've made my peace with my son having Down syndrome, with his being different. I adore every inch of him, his body, his heart, and his mind, and I wouldn't change him if I could.

It's changed me, having Finn. It's made my heart more tender towards those who are different, and harder towards those who are cruel or callous or unaccepting of those who are different. It's made me more aware that we all have our trials, that there's always somebody who has it worse, and that I and my family are incredibly fortunate and have a trillion things to be grateful for, Finn being one of those.

Being an advocate in the world of Down syndrome is tricky business. There are two categories of people to whom we are advocating, or trying to raise awareness: the general population whom we want to see that our children are people just like anyone else, deserving of respect and kindness, and those who might actually find themselves in the position of facing a diagnosis of Down syndrome for their own child. What's tricky is that as an advocate, I want to be honest and forthright - I want to show the world at large that my son is wonderful, and that having a child like him in our midst has turned out to be quite a blessing, while being honest to expectant and new parents that yes, it is scary and shocking in the beginning, but those feelings dissipate, and yes, your child will be different, but different can be beautiful if you allow yourself to see the beauty of different, and yes, there will be unique challenges and frustrations to face when raising a child with Down syndrome, but the truth is, no child, extra chromosomes or not, comes with guarantees or without challenges and frustrations.

What I want people to know most is that this is not a consolation prize. This is not our family just making the best of a bad situation. We do not exist under a cloud of sorrow, and we do not dwell on the fact that our son has Down syndrome. Finn just is who he is, and we're pretty much like any other family (albeit a slightly larger one than average!). This is just life, and it's pretty great.
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