Community

When I first heard of Ds, I had no idea the changes it would bring to my life.

You hear so many parents talk about how great it is. It's puppies and rainbows; You'll love being a part of this great community. Well, I have to admit, I heard this face to face at the Buddy Walk this year. The lady in line in front of me took one look at Leighton and asked how old she was. Her words: "Aww... how old is she? You're going to love this community."

Tears came instantly. One, I knew she could tell that Leighton had Ds. I guess a part of me hoped that you couldn't see it. I knew I could. But so many others told me they couldn't. It didn't matter if you could or not. I wasn't sure why I cried or hoped you couldn't tell. It wasn't like it was a cold sore and would eventually go away.

Two, I hadn't experienced the community yet. I had a little interaction with a few moms but nothing too huge to write home about. So what she was referencing wasn't my reality to this point. One mom in particular, Brianne, kept in contact with me from the beginning and we had become friends. Yet there really wasn't anyone else that I connected with yet. Brianne was so nice was also pregnant and ironically due the day before I was. This was her second baby as her son Patrick had Ds and was the first kid I ever met with it. I remember telling Jay the first time I talked to her, "She was really nice. I think we clicked and have a lot in common." She was much younger than me. Really only 6 years.. but that's alot when you are in your 30's and scrutinized for your 'advanced maternal age'. She was in her 20's so she should have been safe according to the 'laws of maternal age' as they call it. Many of the other moms SEEMED to be older. Not that I thought that was good or bad, just not as easy to connect with. Or so I thought.

I really didn't have a lot of friends in this area either. After I first left the city and the reality set in that I would be an Indiana resident, I was sad. I no longer could grab lunch with my BFF on a weekend. Or hop over to dinner with my girls for a night out. Nor could I ever take a Target run like we used to do. It was now a challenge to see everyone in my life. That was (IS) hard. I miss my Mom. I miss my BFF. I miss my family. I miss the convenience of being near them and seeing them on a regular basis. Yeah, I lived in Chicago for over 5 years at this point, but now I wasn't coming home either.

I didn't think it would be as hard as it was to make new friends. I don't go to bars, church or really do much outside of home though. Jay and I are hermets and find pure joy in being in our home. So getting out to meet people would pose a challenge. I became a Pilates instructor to meet people and I met a few folks, but once I got pregnant, I had to quit teaching. Who knew breathing and working out would be so hard. Ha! I liked those people but I never connected to anyone on a deeper level outside of the studio.

Insert our little angel and her extra chromosome. Now I have met a whole new community. Brianne and I have stayed in touch and speak on a regular basis. Heck, I kinda like her. (She'll appreciate that inside joke.) I have met so many other moms too. Because lets face it, you can talk to other moms with typical kids, but there is a whole different kind of relation to a mother that faces the challenges you do. One of the moms, Christine, wrote about the community of Ds and Special Needs, in an article that was published in the paper. It was a nice piece. 

Along with Brianne and a few other parents and non-parents of kids with Ds, I am exploring the idea of opening a Gigi's Playhouse here in our area.We are still trying to get the foundation set with a board, etc. But we really want to bring about a location for our kids to go and a place for the community to go that teaches about Ds. A place and a resource for new moms that have no idea what this world is all about. Especially the ones that only get the scary info from the doctors.

We are trudging along and hope to keep the momentum going. It will take some time. But our kids need this. Our community needs this. It can happen. A lot of work in our future. But it can happen.

I think back to those days when I was a bit lonely and lost out here in the cornfields of Northwest Indiana. A gal from KY that lives in more country than I have ever touched, just trying to make a few friends. So much has changed and there is so much more to come.

I am really thankful for my life now. Especially for my little girl and her extra chromosome. Who knew this is where I would be now. I wouldn't trade a second of it... horrible doctors and all. They serve a purpose in my life... of what that is, I'm not sure just yet. But in due time, I shall know. Patien(ts)ce is what I am guessing. Teaching me to have some and them to be better with theirs.

For now, I love this community and plan to expand it. One doctor, one person and one friend at a time.

Until next time....
Shona


Comments

  1. Hey Shona - I grew up babysitting for an amazing little girl who has grown up to be an even more fabulous woman. She graduated high school a few years ago, has a boyfriend of 2 years, and works at Gigi's Playhouse. If you are ever looking to talk to someone about Gigi's or if you ever want to talk to her mom who is SUPER awesome let Nate or I know. They still live down the street from my parents and they are the best family ever! Love reading your blog.

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