Y'all, this is a long story. I haven't written about it because it's been so crazy. Amazing, but overwhelming.
Ben was born in July of 2011, and he was diagnosed with Down syndrome. I needed community. I had questions. I was scared. I found some supportive groups on-line, but I craved real relationship with other families in my town.
God provided in a major way. When Ben was six months old or so, I met my friend Nellie. She and I had both been asking our Early Intervention case manager for contact information for other families. After enough asking (the squeaky wheel gets the grease!), we each received a list of 5 families or so. She called me, and our support group was born.
Nellie and I met for the first time at a local park. We talked, and I watched her beautiful boy crawl and play and wave - and it was so good to have a friend, and to see the hope and possibility in her son (who is one year older than Ben).
We thought it would be fun to celebrate World Down Syndrome Day 2012 together, so we divided up our little list of families and invited everybody to a potluck. Seven families came.
Over the next couple of months, in fits and starts, we began to become a group. A community. We had a moms' night out. Then a pool party. Then we started meeting monthly for dinners or playdates. Gradually, more families joined the group. We met some parents of teenagers with Down syndrome. Families of elementary students joined. At our second World Down Syndrome Day event, we had around 100 people attend. Boy, was it noisy that night at Chuck E. Cheese!
We started talking about events. What else could we do? Several of the moms suggested a Buddy Walk, so we learned about that. In order to do a Buddy Walk, you have to have a sponsoring nonprofit. We thought we had a partner organization, but that fell through. I cried. Then we regrouped. An awareness walk! Not really a fundraising walk, but an awareness walk for families to come and get together and celebrate our family members with Down syndrome.
The group did a BBQ plate fundraiser that raised just over $2000 for the walk. And we started planning. Our little support group filed papers to register as a corporation in Texas. We elected a Board of Directors. We created a website and a facebook page. We've filled out forms and sent off information, and we are now in the process of becoming a 501(c)3. Until that comes through, we are established as an organization through my church, BT McAllen.
Now here we are. Two weeks before our very first Step UP for Down Syndrome Awareness Walk. As far as I know, this is the first Walk of its kind in our community - the Upper Rio Grande Valley. As of this moment, over 275 people have registered to attend as either walkers or volunteers. Several local companies have agreed to sponsor the Walk. College students, churches and Harley Davidson groups are coming to volunteer. We've reached out to local doctors, therapists and schools - and have had a great response.
I wish I had the right words to say here. I am amazed and thankful and blessed and excited about this organization. About these people. About the awesome opportunity we have to celebrate Ben and Roman and Alex and Ella and Tommy and Sammy and Celinda and Melinda and Mason and Emily and Karina and Madi and ... and ... and ... lots of people that I haven't gotten to meet yet.
And I'm astonished by the doors that have opened for us across the Valley. And across the US - the Down syndrome community has been very welcoming; we've received help and support from our neighbors in Brownsville, the Down Syndrome Association of Houston, the Down Syndrome Association of South Texas, friends in Kansas City and Chicago, and Down Syndrome Affiliates in Action. Not to mention the other moms that I've met on babycenter.com and facebook!
I was elected President of the RGVDSA, which is kind of crazy because Ben is only two years old. I feel alternately terrified, enthusiastic and completely inadequate.
But I know that I need to have real people in my life to answer questions, to celebrate my child, to understand my fears and concerns, and to help us navigate through this journey. I want our community to be a place that values and includes people of all abilities. I want to advocate for my son, and I want to provide resources for other families who need support - whether they have a baby with Down syndrome, an older child, or an adult family member.
For my praying friends, would you pray for me and for our group as we put this organization together? And pray for this Walk!
If you're local, join us at the walk. And everybody could like us on facebook. :)
This is the start of something big.