Thursday, March 28, 2013


March 21st was World Down Syndrome Day. It is a day to celebrate people with Down syndrome each year. Last year on that day, I was probably celebrating getting out of my first trimester of pregnancy, completely unaware that there was such a day. I probably would have wondered why on earth anyone would CELEBRATE Down syndrome. Since Bryce's birth and diagnosis, I have been a member of this club...the club I didn't ask to join and the club I didn't realize existed. I have avoided being a part of the club. I have told myself that so far Bryce is just like a normal baby...that I have nothing in common with these people whose kids are sick or delayed. March 21st ended up being surprisingly emotional. I watched my facebook news feed flood with pictures of little faces like Bryce's. Little faces with flat bridges at the top of their nose....ears low on their head....short arms...big bright eyes...unadulterated smiles. I watched as Bryce's picture was featured right along side these other special kids, and realized I AM part of the club. My child is healthy, sure, but so are many of these other kids. No one else knows how it feels to learn your child has Down syndrome except the other members of this club.

My family and friends have been nothing but supportive. I can talk to my friends and family about physical therapy, delays, thyroid problems....but no one can really understand. I think March 21st opened my eyes and made me realize I need to stop being scared and reach out to others who DO understand. But it is scary. In many ways, I'm having to "face the music" now more than I have since Bryce was born. Now that he's coming up on 8 months, I am noticing a delay. I am getting scared about the fact that some day he's not going to be a cute little baby anymore. Some day he's going talk a little too loudly in a restaurant and people are going to mutter about him under their breath. I am getting worried about how I'm going to deal with it when someone calls him retarded. I always worry about how it will affect his spirit and his brother's life. I need to hear how other people have dealt with these things.

Despite my emotional take on the day, I was also completely inspired and encouraged by the photos and kind words I saw online that day. People with Down syndrome have normal relationships with their families. They can get married. They can work full time. They can live on their own and take the bus to work. They have feelings and thoughts and talents. I was also encouraged by the support. I am referring to an organization called Circle 21, which is a Down syndrome group out of Toronto, but it has members from all over the world. Their facebook page features pictures/captions of people with Down syndrome. About 2 months before WDSD, they put a call out for photos of people with Down syndrome with a sign saying where they are from. I submitted this picture of Bryce:

It was one of the pictures featured on their page on March 21st. I cried everytime I looked at it that day and read all the lovely comments from people all over the world. As of right now, Bryce's picture has 4,834 "likes" and 253 "shares". My boy's sweet smile touched that many people. If you figure each of those 253 people who shared have 100 friends who saw this picture, added to the 4,800 people who "liked" it....Bryce probably brightened over 25,000 peoples' day...even if it was just for a second. The awareness and support is so encouraging. There will always be "haters", but I really have hope that things will get easier for people like Bryce. Even if it's just my friends and family, or my few blog readers, my goal is make people see Bryce as a normal human being. I have gone out of my way since he was born to really look at people with disabilities. I didn't do that before. Working in a grocery store, I have had many opportunities to do this in the last 6 months. There is one customer in particular who has delays and wears a helmet. I always figured he couldn't even talk. One day he came to the service desk to buy a lottery ticket, along with his aide. I made  sure to talk to him and asked him what he would do with all the money if he won. He said he's spend it on pretty blondes like me. Not only could he talk, he could flirt! He even came back to look at my ring finger and feigned being disappointed seeing a ring on it. It made my night, and if it weren't for Bryce, I would have completely overlooked this man.

Bryce's early intervention teachers have mentioned to me several times that they've never worked with a family who had a prenatal diagnosis. While we don't know for sure, this is most likely because 92% of people who get a prenatal diagnosis decide to abort. This breaks my heart. I am POSITIVE that if people were educated and exposed to people with Down syndrome this number wouldn't be so high. While I can't think of a single reason I would ever abort a baby, I can understand their fears and misunderstandings. I was forced to learn about Downs because my son was already in my arms...I had him and I was a member of this club no matter what. It was scary though. The day he was born, I thought life as I knew it was over forever. I was wrong. I am so shocked by the number of doctors who still suggest abortion or adoption for these kids. I have read stories that completely shock me. My doctors and nurses were nothing but absolutely supportive and I am so thankful for that. That day would have been so much more devastating if suggestions like giving up my baby were made. I can't even imagine. And it's still happening. A lot, apparently. I am wondering if there is a program in place in which families who recieve a prenatal diagnosis can talk to people like me...people already in the club who could assure them that life will not be over. If there isn't, there should be. 9 out of 10 sweet babies like Bryce never even given a chance to live! It's heartbreaking.

This ended up being a little more rambling and emotional than I intended, but it's been brewing for a week now. I still haven't figured out exactly what my new calling is--why God gave me Bryce--but I'm praying that I figure it out sooner than later. I think my first step is to stop avoiding "the club". Once I work up the guts, I am going to attend some kind of event or meeting. When I do, I'll be sure to let you all know how it goes.

Happy Easter everyone!

xoxo, Julie

No comments:

Post a Comment