Down Syndrome.

Thursday, January 21, 2010

Down Syndrome.

Every now and again I have to re-accept the fact that I have a child with Ds. When Kyler was 1 1/2 my mom gave me a book called "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives". It is a bunch of entries from mom's about the time they found out their child had Ds. Since reading this book and it's sequel "Gifts 2" I have been wanting to write my story. But whenever I try...I can't. Not because I don't want to but I can't put my feelings into words. I can't pick the moments that I would want to share and the ones to leave out. I can't describe the immense pain and sorrow I feel at times but also the amazing amounts of love and joy. I have written my story a few times and it never fully captures the essence of what I want it to say. Mine's not going to be published in any book - I just want it for me. I want it for Kyler. I want it for Taegen.

"Gifts 2" is the sequel and it contains entries from moms, grandparents, siblings, teachers, coaches of people with Down syndrome. It made me realize that I was not the only one affected by Kyler's diagnosis. I really didn't get that until reading this book. I felt alone in my feelings and I still do but it's different knowing that other people had/have to accept this diagnosis too. My parents had to deal with Ds when Kyler was born, just like Ryan's parents did. I am curious to know their stories too.

One of my resolutions this year was to write my story and give it to my parents and Ryan's parents with a copy of "Gifts 2". So far, this resolution has been unattainable because I can't express myself. I can't express myself while still capturing everything I feel. I know that it's still January and I still have 11 months to complete this resolution but I have been trying to put on paper my experiences for 2 years now and so far it hasn't worked. Every so often I have to "re-accept" Ds. I NEED to read blogs of other parents with a child with Ds. I have to cry. I have to re-read "Gifts 1 & 2". I have to feel alone. Then I pick myself up and get back to loving all my boys.

I have heard people say countless times to both Ryan and I that Kyler is very lucky to have us as his parents and there couldn't be a better family for him. While I am flattered by these comments, I don't believe we are that different than other family out there doing the best they can to raise their children. I think that just maybe these children come into our lives to teach us... and because they have something to give to us, not because we have something special to give to them. Kyler was once given a blessing that said Kyler's disability is a protection for not only Kyler but for our whole family. I honestly cannot think of one thing I have taught Kyler (or Taegen or Strider) that they couldn't have gotten from any other well-intentioned parent, but I do know they have taught us more about life simply by there presence than we could learn from anyone else. It is this thought that keeps me going on the days when I feel overwhelmed and alone. So, I guess I will keep trying to write my story and maybe, just maybe, one day I will be able to capture the essence of what I want to say.

Posted by Gage at 8:05 AM 9 comments