I have been doing some lurking around the Down Syndrome Community. Funny, that I feel the need to lurk. So many emotions…the heavy hearted longing and wishing that things were different. That I to could share pictures of Madeline rocking her extra chromosome and discuss the triumph of her hitting her milestones. What I wouldn’t give for a video of her first steps or first words. I see the photos of the other children and I can stare for hours. Sometimes they make me smile. And other times the tears silently flow.
I have a dear friend with a little girl, Ms. O. Ms. O and Madeline would have been the same age. Ms. O’s Mommy asked me once how I felt when I saw Ms. O. I told her, ” I feel insanely jealous”, not in a hateful way, but in a way of wishing that I could be just like you. A jealousy that perhaps only a mother of a child with DS would understand. That instead of me going through hoops to get that Little O to hug me, my own Madeline could be here to warm my heart with snuggles and slobber me with kisses.
Do I still belong to that community? I don’t know. But do I care about that community? WITHOUT A DOUBT. When I see the other babies and children I think how lucky their family is. Lucky to be blessed with this incredible person. I know these families might think I “romanticize” what life would be like with Madeline. Maybe I do. I remember it was a lot of work. Lot’s of appointments, hospitals and therapists. It was exhausting but the pay off was beyond huge. One cannot put a price tag on unconditional love. Giving Madeline life and making that life full of unconditional love and unlimited possibilities. She was strong in mind and body. If her body was weak her Spirit was not.
That is what I see in the Down Syndrome Community. Strength of spirit! And the unmatched determination for these children and adults to live a life where the possibilities are endless. I see a community that wants nothing more than all people to know this about them and their child. Isn’t that what any parent wants for their child? I did…I still do.
March 21 is National Down Syndrome Day. 3-21. I love it! I even got the t-shirt. But this year apparently, they want to spice up the campaign and give it a theme. Make it “Odd Sock” day or something like that. I don’t even know the theory behind it. My beef, why would anyone (especially, working on behalf of Down Syndrome) use the word “Odd” in its campaign? Instead of helping others to move forward in any archaic beliefs they have about Down Syndrome, doesn’t this take us back to the world where the children were called Mongoloid and thought to have very limited capabilities.
Because I have learned first hand, more people than you think still hold these beliefs. The belief that these children and adults are somehow a burden on their families. Sad but true…in any day and age…but now that we supposedly know better. More than one person had tried to comfort me with Madeline’s death by telling me she would have had so many challenges in life or questioned who would’ve cared for her.
Don’t we all face challenges of some kind? Aren’t we all a little “Odd”? I know I am. Ask my family, at times it makes me challenging to live with. My boys would be more than happy to agree. We are all different. But for many of us we appear, “normal.” There are no tell-tale signs of what makes us unique. For the most part this prevents us from dealing with some long-held beliefs that others might see our life as less than in some way.
But for those who have the extra chromosome their path might not always be as smooth. They will more than likely confront a road block or two. Although much progress has been made, we are still in a time when as little as three years ago, when I first learned Madeline had Down Syndrome, I was then offered an appointment to terminate my pregnancy.
In order to challenge and change the belief that life with an extra chromosome is somehow of lesser value or even a “burden” I believe an easy step would be to refrain from using the word “ODD” when showing support for a community we love and care for. Odd usually has a not so great connotation, like, “Odd man out”, “Odd-ball”, when something doesn’t seem quite right we say, “well, that’s odd.” I could go on: but I won’t.
Perhaps I do still have a place in the DS community. Because when I read or hear things that remind me there are still many archaic beliefs about having a child with down syndrome it makes me crazy. I would gladly work for any child to have the life I wanted for Madeline. A life any parent would want for any child. I don’t find that “ODD”… do you?