Wednesday, April 04, 2007

Greatness in Groups

Besides blogging here, I spend a decent amount of time each week reading messages from other parents at the 1p36 Deletion Yahoo Health Group. It's a huge help for me to connect with other parents facing the same challenges that exist in my own home.

There are families with children who are older and have successfully made it through whatever current challenges my daughter is facing. They help give me hope and a perspective on what to be prepared for down the road. Currently I've learned that I need to be preparing for the future care of my little girl. Turns out, aside from unforseen risks, my daughter may live as many years as I do, if not longer. Great news and a great responsibility.

There are also many new families who have recently joined the group after their child's diagnosis. I love reading the things they post just as much as the seasoned care givers. It helps me remember how far my little daughter has come. Even though we've faced challenges in the past, when I look back on them I still have fond memories. Like when we were working so hard to get my daughter to get up and crawl and all she wanted to do was scoot around on her back side. Frustrating, but fun to look back on. And sometimes I'm even able to pitch in on these discussions with a bit of experience I've gathered along the way.

The Internet provides a powerful tool for those of us raising children with rare challenges to get together and stregthen each other. If there isn't a convenient support group that addresses the specific disabilites of your loved one in person, it's worth looking online. It's not as personal as being face to face with others who are sharing in your experiences, but it's so much better than facing it all alone.

A heartfelt thank you to all the great participants in the 1p36 Deletion Yahoo Health Group and You continue to be a strength to my family. Also a warm welcome to the many families who have recently joined us there. There really is strength in numbers. We're glad to have you.

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