Brendan and Gemma

Brendan and Gemma

Saturday, April 16, 2011

Stigma vs. Reality

So I was thinking about people's reactions when you tell them your baby has Down syndrome, (and probably most any other "problem" your child might have). It's usually followed by an "ooooohhh, sorry, that's too bad..." The thing is, even though they mean well, and probably don't know what else to say, I really don't want anyone to feel bad for Gemma, or anyone else in our family. In truth, I don't even know why I feel it necessary to tell people I know, except I feel if I don't that means I'm in denial or not proud of her as she is. She is a perfect, beautiful little girl, and we all love her and her extra chromosome. Part of my fear and sadness when learning that she did indeed have Down syndrome was that people would always look at her and assume they knew all about her based on the facial characteristics which make it obvious. It is like a scarlet "D". I worried about the future, and how it might be hard for her, how her choices might be limited. What I realize now is that I was an idiot...maybe that's too harsh, but I was certainly ignorant to some things. First thing is, she is very much like a typical baby, she has not been a challenge at all. (at least not more of a challenge than any other baby) Second thing I realized, thanks to some very basic pointed questions from my 5 year old, is that there is nothing she can't accomplish if she wants to. She can still play, have fun and have friends. She is very much thriving on the love she gets here at home. She's smiling, cooing, giggling a little, she loves music and dancing, and she hates being messy. I still worry about her future a little, but I am learning to focus on today and really embrace every moment. No one is promised tomorrow, even those of us with a mere 46 chromosomes. We all want to be happy, and we should all be allowed to define what happy is to us, no matter what "problems" we may have, no matter whether those problems are visible or not. So, I guess my lesson learned is that once the layers of stigma got peeled back, what was left was not nearly as scary as I thought it would be. The reality was more beautiful that I could have ever imagined.

Friday, April 8, 2011


Our life right now is wonderful. We have 3 children between Aaron and I, Harlie, 17, Brendan, 5 and Gemma who is 3 months...almost 4 months now actually!! Gemma has Down syndrome, but so far is just like any typical baby. So..what's different then? Why blog? Well, I realized that what I thought of as "hopes for a good life" for my children, were actually my expectations of them to fulfill what I considered a good life. What constitutes a good life anyway I asked myself? Is it what society dictates? Do we aim to please others? Is that fulfilling or does it leave us feeling empty and as though we've somehow violated our own soul? A good life, in my opinion, is one that you enjoy living, that is filled with love, and that allows you to feel like you can be true to yourself. My children are not here to validate me or accomplish things I wished I had done. Their life won't necessarily be perfect based solely on the number of chromosomes they have. I love them all so very much, and I accept them as they are. My job is to guide them on the beginning of their life's journey, not to choose their path for them.