Spread the word

Last night was the monthly meeting for the Junior Women's Club of Loudoun that I recently joined. I love the fact that the women that attend these meetings are so passionate about volunteering and making a difference in the world. Food donations are taken at each meeting to support one of our local food banks. Next month, in addition to taking food donations they are taking unwrapped gifts for teenage boys. We will be supporting an organization called "Birthday Blessings. This organization gives birthday presents to underprivileged children in our county. In addition to supporting Birthday Blessings we will be involved in sponsoring 10 kids so they can play in a soccer league that they normally wouldn't be involved in because they can't afford it. I won't list all of the things that are going on but I'm looking forward to the next few months.

So I'm sitting in the meeting, minding my own business, thinking about what volunteer opportunities I'm going to sign up for, when my friend Pam slides a note across the table to me. And asks me if I would be willing to talk about the campaign. You know the one.

And I agreed. We approached the president of the club during a break-permission granted- and after the break we got up to speak. (Pam has been involved in this organization for a few years so they know her well. They also know all about Eliza and that she has Down Syndrome.) Pam started off by reminding everyone that 3/21/09 is World Down Syndrome Day. Last year she put together a video montage of Eliza and showed it to the group. She reminded everyone of that and fought back tears as she talked about it. Which meant, of course, that I started crying too. So after she said a few more things she introduced me and told everyone (which I'm sure they'd already figured out) that I also have a child with Down Syndrome. Of course at the mention of my precious Lila I get all choked up again. SURE- I said- after you've made me cry- now it's my turn. But I had written everything down so I turned my attention to my paper in order to stop my tears. I talked about 3-31-09 and the campaign to end the R word. I told about John McGinley having a son with Down Syndrome and the fact that he is a huge advocate for people with DS. I mentioned that he's been key in promoting awareness of and respect for individuals with intellectual disabilities. And I told them that the words "intellectual disabilities" are replacing the words "mental retardation". And that it's not respectful to say "retarded" even if it's not meant to hurt anyone. That it is hurtful. To our kids. So spread the word.

Sidebar # 1- People saying "retarded" in a casual or flippant way didn't really bother me until recently. A year ago I probably wouldn't have joined the campaign to end the "R" word. As long as they weren't actually describing someone that had some kind of delay I was okay with it. After all, most people don't really mean any harm when they say that word. But the more I think about it the more it bothers me. It is very disrespectful. To my daughter. To my friends' sons and daughters. To people I haven't met yet. To people I will never meet. To people that have already passed. To a loving group of people that don't deserve to be treated with disrespect. And as Lila's delays become more and more evident to us and to the world around us, the word "retarded" tends to sting. So do me a favor- don't say it. Even if you don't mean any harm. Because it's hurtful.

Sidebar # 2- Speaking in public about Lila is a huge deal to me. When it comes to Lila I am one big tender on-the-verge-of-tears mama. She has hit the deepest part of me. Straight to the heart. When it comes to Lila I am raw. Vulnerable. Naked. I love all three of my kids with everything in me. I love them all the same. And I love them all differently. And everyone that has kids knows what I mean. And everyone that has a kid with Down Syndrome knows what I mean. It's different. (When I was pregnant with Lila, after the prenatal diagnosis of DS, I met my friend Pam, whose son Riley has Down Syndrome. Pam told me that she loved all of her boys but there was just something special about Riley. And that I probably didn't understand right then but I would in time. And she was right.) So back to the subject because apparently the sidebar got sidetracked. Last night when I agreed to talk about the campaign to end the "R" word I knew it wouldn't be easy. I really tried not to tear up. It was inevitable. I just don't want people to misunderstand why I cry. When I talk about Lila I'm not crying because I'm sad. I'm not crying because I wish that she didn't have Down Syndrome. I'm crying because I've always cried easily but since Lila was born I cry.............. more. And I'm more sensitive. And more patient. And more loving. And more vulnerable. And more protective. And more appreciative. And closer to God. And the list goes on. But how can I communicate all of those things effectively? How can I explain that a diagnosis that brings sorrow and fear turns into a beautiful angel who brings so much love I feel like my heart can't contain it sometimes? That I probably wouldn't be this sensitive or patient or vulnerable if not for Lila? I'm not sure but I'll keep trying to figure it out. And in the meantime I'll continue to talk about and advocate for Lila. And, inevitably, continue to cry.

Linda