I have never been more proud of my local Down syndrome support group than last night. Lowcountry Down Syndrome Society (www.ldssga.org) has done some amazing things in its only five years in existence. The group has raised a lot of money through a very successful Buddy Walk, which last year drew more than 3,000 participants. That’s a pretty impressive crowd for a city of Savannah’s size. Because of the success of our Buddy Walk, we’ve been able to launch some great programs that hopefully will only get bigger and better in the years to come.
A couple of our moms just wrapped up the second annual Buddy Camp, which pairs up our children with therapists for two weeks in the summer, allowing our kids to keep their skills sharp before they head back to school. In June, we kicked off our first ever NIGHT OF CHAMPIONS, celebrating the achievements of six area adult workers with Down syndrome and other intellectual disabilities and their employers.
So as Down syndrome groups go, we are active, we are creative, we are passionate and we are successful. But I have to say, I believe the group’s biggest success lies in the personal connections we have made with each other and the support we can offer new families who seek us out. And that brings me back to last night.
We had a regular general membership meeting where the Buddy Walk was the major item on the agenda. The beauty of our meetings is that parents are encouraged to come with their children in tow – all their children – not just their children with Down syndrome. (The meetings are great fun for Deedah as she is getting to know a great group of other children around her age who also have brothers or sisters with Down syndrome. I picture this group becoming great pals as the years go on.)
Usually for our meetings, a babysitter is hired to keep the older children entertained in one room, while the adults and the babies hang out in the main room where the business is conducted. Throughout our meetings, though, children are running in and out and sometimes it is chaotic and loud and you have to wonder how we get anything done, but we always do. And the children are a lovely audio and visual reminder of our mission. We’ve also found that for our new parents, it is inspiring for them to walk into a meeting where you are likely to see probably more children with Down syndrome all assembled in one room than you have ever seen in your life. And to see how beautiful and “normal” they are – and to see how much their parents love them – and to see that these are just regular families – who just so happened to be brought together by an extra chromosome.
Last night, the mother of an eight month old girl joined us for the first time. I personally was proud and happy that she came. And I have to thank Jonathan for that. The woman had dropped by our church on Sunday following services to thank our pastor for helping out her family years ago during some tough times. She wanted to let him know that things were better now. She had an older boy and girl with her and was carrying a baby girl whose face was buried in her mother’s shoulder.
During the time she was talking to our pastor and his wife, she saw Jonathan running around the church grounds with the pastor’s kids. (Our pastor and his wife watched Deedah and Jonathan this weekend while Phil and I went away to celebrate our anniversary. ) The woman said to our pastor, “Who is that boy?” My pastor said, “Oh – that’s Jonathan.” She said, “But he has Down syndrome and he’s running around just like any other boy – just like my boy.” My pastor replied, “Yes that’s what Jonathan does.” And then the woman flipped around her baby and said, “My baby has Down syndrome. I never thought she’d be able to run and play with the other kids like that. And talk like that boy.”
My pastor told her she had to meet Phil and me and get to know the other parents involved in Lowcountry Down Syndrome Society. Thankfully, he got her contact information and I called her the next day, and the day after that, there she was – sitting at our meeting with her beautiful baby on her lap and her older children running around with Deedah and Jonathan and all the other older kids. At one point Jonathan ran in and she said to me, “I can’t believe your son. He is amazing.” I thanked her and joked with her that she better watch her baby because Jonathan is quite the lady’s man and he may want to marry her daughter some day. We laughed , but then I also added that Jonathan does seriously talk about wanting to be married and that I certainly hope he finds love, just as I hope Deedah does. She spent part of the meeting flipping through our annual calendar that one of the moms gave her, smiling at the gorgeous pictures depicting the children’s wonderful achievements. That for me would have been enough – the fact that she made the effort to come, the fact that she would go home with a calendar, the fact that her older kids would meet some nice new friends.
But then the meeting became in my mind our support group’s proudest moment. Why? Well, because before the meeting and after the meeting, almost every parent there came up to this woman to introduce themselves, offer their congratulations and to ooh and aah over her baby! I know it’s a simple gesture – I know it happens in Down syndrome support groups around the world everyday, but it is powerful, meaningful and potentially life-changing. You will certainly never forget the first people or person who extended you kindness, support and understanding following the birth of your child, or in my case, when Jonathan was still in utero. In this case, it came at a meeting eight months following the birth of a beautiful baby girl. That is a long time to wait to be surrounded by people who know better than anyone else the joyful journey this young mother and her family will take – and who will understand the bumps along the road as well. I’m so grateful our support group was there last night, and I hope we will continue to be there for this mom’s ride.