I hear the squeal of a young girl as she runs to meet a family just arriving here in Bridgewater, Massachusetts for the Helping Hands summer outing. I watch her run by, say hello to the mother and then spot her friend, probably a friend she sees two times a year and only for a day or two at most. They hug and immediately run off to do some of the art projects together... quickly catching up on what has been going on in each other's lives.
I look at my little Ella, who is presently crawling her way across the blanket to get a fistful of dry grass to put in her mouth. I can picture the future and how she'll come to this event when she's older, seeing friends she has made at the events and showing off the latest fashion, her new ability and chatting about the music she is listening to.
One of the great things about the time we live in is social media. It has truly transformed how we communicate and keep in contact with each other. I used to wonder how I could keep in touch with all the people I knew and met over the years. Now you can easily find wonderful groups that have the same interests that you have, and some of them can make what feels like a small world turn into a much bigger community.
During our research into Ella's "little fin" a year ago, I was able to find groups of families with children who also had limb differences. I joined. I stalked the boards for a while to learn more about common pitfalls of other parents. What I discovered was that most parents were extremely in tune with the wonderful person they were now raising. Having the community was a bonus where they could share their child's growth and discovery.
We attended a winter event when Ella was only three months old. Held in a hotel outside of Boston, the event was well organized and helped us see, in person, the interactions between these amazing children and their parents. Kids running around with their friends, doing what all kids do at an event where they "hafta" go: Begging their parents to go to the pool. Playing in the game room. Running from one side of the hotel to the other and making their own fun.
I go back to my picture of Ella and her future self. My little girl not needing to be near me or mommy, looking forward to the event to see her friends that she will inevitably be on Skype with when we get back home. She'll trade stories of school, sports and what she's been doing during the year.
When you discover that your child has a limb difference, you and your spouse may feel all alone. You may not know what to do or how to do it. You may have had an idea that your child would be born and live as a perfect child. When your definition of perfect is challenged, you should take the time to feel alone and when you're ready, come find the community. They will bring you in with open arms and open minds. You and your child will never need to be alone.
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