Wednesday, June 17, 2009


I have a limited time to write. Emmie is sleeping. Aidan gets home from preschool in less than an hour. I am feeling so much right now & want to get it out!

Last night I was "Googling" & I came across a local organization, the "Down Syndrome Aim High Resource Center." Only 3 miles from my house. The organization provides parent-to-parent professional services & support to individuals with Down Syndrome & their families. Perfect!!
Just what I need. Those of you that know me, know that I am a "go getter", always looking to learn something, a new endeavor, or just get some help along the way. On the website, I came across a link for the Aim High Calendar, filled with pictures of babies & children with Down Syndrome. Sweet little babies with welcoming & loving eyes. In those pictures I saw Emily. There was a form you could fill out for your child to be in the calendar. I didn't think twice. I downloaded the form & printed out a picture of Emily smiling. It felt right.

Today I decided that instead of mailing the form & photo to Aim High I would go there in person with Emily. I wanted to learn about the organization & what it has to offer. I also wanted to connect with other people in my situation. I pulled in the parking lot & I saw the sign, "Down Syndrome Research Center." It was surreal for me. Am I really here?? Deep breath.....

As I walked into the office, I felt empowered. I was doing this for me, my daughter & my family. In my opinion, there was no other way to start feeling better about Emily's diagnosis than to jump right in. I was greeted by two friendly women, Debbie & Diane. They were filled with smiles & hugs. Emily & I stayed for about a half hour. Both Debbie & Diane have daughters with Down Syndrome. They told me stories of when their daughters were born, how they felt, what their daughters are doing now. As we were talking, I kept looking at Debbie. There was something about her that felt comfortable & familiar. She looked & sounded just like my Aunt Jackie, my godmother. I felt like I was home.

I was telling Diane how I had all these dreams of Emily being a dancer like her mother. For those of you that don't know me, I am a dance teacher & have danced since the age of 3. Deep down inside there has been a part of me that wants that for Emily, but feels like it can't happen. At that moment, Diane pointed to a picture of a teenage girl dressed in a tutu & pointe shoes. It was Diane's daughter. Anything is possible!

I turned in the form for the calendar & they told me that the calendar is filled for 2010. So, Emily might be in the 2011 calendar. During our exchange, I looked on the table & there was one of those Dutch clogs, painted with beautiful flowers...not sure what the clogs are called...Welcome to Holland!!! :) I immediately felt at peace. Aim High offers playgroups, conferences, information & support. I feel so lucky to have found them. Before I left the office, the women gave me a book & lots of literature. The book is called, "Road Map to Holland." :)

This was a big step for me today. I feel like I can relax & start to accept our new life. It's ok. Different is ok. Emily is ok. I am ok. WE ARE OK.

Gotta run. Aidan's bus will be here any minute.


  1. That place sounds wonderful. Way to go diving right in! If you need additional reading, I just finished a great book titled, "Gifts - Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" by Kathryn Lynard Soper. [Not sure about you, but I'm on information overload about now :)]

  2. I feel so uplifted by this blog entry! I don't have a child with downs syndrome, but watching you grow to understand it and accept it is so inspirational for mother's of all children.

  3. Hi Lacey,
    What a little beauty Emmie is! I can't wait to meet her :-) I am adding your blog to the DSNM blogroll.

    Roadmap to Holland was a good read for me in the beginning.