Picnic Girl
TinyE got dressed up special for our very first outing with Little Fins (with an adorable resemblance to Scarlet O'Hara, complements of some clothes from Grandma J and Aunty C). Little Fins is a local group that was formed in 2003 by families whose children have upper limb differences. From their website:
In March 2003, our daughter Lila was born missing her right hand. The doctors defined the occurrence as a "vascular event - a failure of formation". Over time we found other families in the area that had experienced the same event in their lives, and like us, were searching for others to share with. Within a few months, we had located and added to our group close to a dozen families, and the list continues to grow.
As our group grew, we decided a name that was fitting to our situation was appropriate, and went with "Little Fins", after the Disney movie, "Finding Nemo" where the main character, Nemo, a young clown fish who goes on an awesome adventure, was born with a "little fin". An inspiring movie to all, it is especially meaningful to our family members who have "little fins" and tells an important story that nothing is impossible.We had a really great time meeting the other families and watching the kids interact. Upon arriving, we found a table of parents who called themselves "The VH Table", named after the hand surgeon we all have in common. We compared our experiences with the children's hospitals, Shriners, and OT services.
One other family has an 8-month old named Katelyn, who immediately crawled over and grabbed TinyE's face - repeatedly. It was fun to see the differences in our two girls, just being one month apart in age! I think Katelyn was far more interested in TinyE, and TinyE was a little started by all the groping and giggling! Eventually they settled back into their individual worlds, quietly playing on their own (or as Dave said, "enjoying a meal together" as they chewed on their toys).
Meanwhile, Dave and I got to talk with Katelyn's parents. It felt really good to just sit with other people and answer questions like, "Did you know about her hand before she was born?" "What was it like when you first saw it?" "When did you first see Dr VH?" "What are they telling you about surgery?" "Do you really believe it when people say they don't notice it?" "Do you feel like you should say something when people notice but don't ask about it?"
Another commonality: almost every family in Little Fins is living by the credo "Wait and See". Some children have been fit with prostheses, some (like TinyE) are still discovering their realms of functionality, some are in the process of surgeries. Everyone agreed that they liked Dr VH's tendency to wait before doing any radical surgeries -- giving the children every opportunity to develop what they have before embarking on procedures that they can't come back from.
Shortly before we left, we had a chance to talk with another mom there. Instead of standing there with toys or books in her hand, she held her daughter's "arm" while the little girl ran around, just doing things that kids do. And she said, "Oh, it must have been difficult having your
first baby but also having to deal with this." She was very supportive, and I thought about her comment on the way home.
It was difficult, yes, but maybe not the way you'd think. Physically and emotionally, there were all those challenges and questions and concerns that go with learning how to take care of a new baby... a first baby. But TinyE's arm didn't take any more care -- in fact, all we did was tailor her clothes so that her little arm was out and accessible to her.
The hardest part was keeping our minds free from borrowed trouble -- all the questions about the future. (i.e., sitting up at 2am, sobbing over a one-week old baby and wondering if she'd ever be able to drive a stick shift... not that it's something her
mom can do at age 36! ) We decided from the very beginning, that there was a lot more to focus on besides her arm -- we had a brand new little girl we wanted to get to know.
Looking around at the other families that day, it was a pretty typical gathering. Kids were playing, causing mischief. Snuggling up to parents. Making friends. Chasing a brave bunny that wandered into the yard. One little charmer was walking around, shaking people's hands.
Nothing different about these kids at all.
