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.



  1. Linda, you asked, "how can I communicate all of those things effectively?" - I think you just did it very well. I especially like/understand when you say, "When it comes to Lila I am raw. Vulnerable. Naked." I get that.

    I think when Aidan was born and we were told he had Down syndrome, a part of me was really hopeful that he would help each of us become better people. His brothers are definitely benefiting from having him in thier lives - and James and I appreciate life and love and courage so much more now. It's like blinders were removed from our eyes.

  2. Sidebar number one totally describes me. I'm 20. I know maybe one person with down syndrome, a teachers kid. And then I started working in special ed, with kids with autism. This lead me to the blogosphere where I encountered all these amazing kids with DS. And that's when the word started to irk me. I correct people all over my college campus, and everyone has been receptive. If people let it slip they get this look of shame on their face, and correct themselves. They're starting to get how it's not ok.

    Spreading the word here in NYC


  3. Linda, you never stop! I am in total awe of you and the things that you accomplish. I am so amazed at your strength and a lot of it comes from your faith, but most of it comes from within because that's who you are. You've always been a very strong person and one that I have always looked up to. I love you and I miss you!

  4. Now I know you love Lila more than me- great.

    Kidding Kidding.You know I don't think that.You don't have to tell me that there is something about that little girl that makes me want to smile.Makes me want to do better...and ALL of the things you already mentioned.

    Thanks for being such an amazing mom to all 3 of your kids.

    Hey... thanks for making me cry too.

    Love you Lady.

  5. Yeah, thanks for making me cry, too. Yes, there's something about Lila. And while I've always had a tender spot for people with DS, it's ever so much more since Lila came into our lives. And I know what you mean about loving each child the same but differently. I only have two, and I don't have one with DS but it still holds true.

    This was an amazing post and you said it well here, I know you just want to be able to verbalize it when you are in front of a group. I will pray that God will give you the grace and poise to do so and the opportunities.

    I love you!

  6. "She has hit the deepest part of me. Straight to the heart. When it comes to Lila I am raw. Vulnerable. Naked." I know exactly what you mean and you put it perfectly.

    And the crying? Oh yeah, I do it all the time over my girl since her birth 9 months ago. I joke around saying I have PTSD (but really I probably do after 16 weeks in NICU/PICU). Just tonight the tears let loose after my girl smiled at me and made repeating consonant sounds for the first time.

    Blogging for me is cathartic but also a way to start to talk about her without crying on my listeners ;-)

    BTW, Lila is beautiful.

  7. Hi Linda. I'm Sarah. I was told about your site through a friend and I was very touched in reading your vulnerability regarding Lila.

    My little girl was a miracle baby in her own way; as she born 3 month premature weighing
    1 lb. 9 oz. It was a rocky road for quite some time. Her name is Hannah Grace based on how Hannah dedicated her son to God in the Bible if He would bless her with a child. In a round about way we named Hannah, after Hannah from the Bible, even though the actual meaning of Hannah does not mean 'decicated to You', this was just our reason we did this because we decicated her to the Lord when we saw how frail she was. Thankfully she pulled through but like I said; it was a rocky road.

    Your little girl is just perfect; a beautiful little angel. I can only imagine what a blessing she is to you and those who come in contact with her. One of my cousins has Down and he is just the sweetest man around; very tender and loving.

    Would it be okay if I followed along your blog as well even though I can't relate entirely to your little miracle? Or what that is like to raise someone with Down? I'd be interested in being educated on this. I just love hearing what God does through the lives of others, about anything.

    Blessings your way,
    Sarah Cecilia