June 26, 2015
One of the hardest aspects of having a child with a rare disorder is that there are so few people who truly understand the daily challenges you face. That is why the friendships formed through our trisomy 4p group run so deep even though the majority of the group has never met another family face to face. We were fortunate to have lived close enough to another 4p family that we were able to meet the Rodgers family with Ellie, which was such an amazing experience for our family and one I wish every 4p+ family could experience. So when there was talk within the group of organizing the first Trisomy 4p family gathering in Kansas City, Missouri I really wanted to help make it happen. I had big ideas of how we could help organize and plan the gathering with Friends of 4p+ hosting a dinner the first night. In all honesty, though, as we started the planning process I was hit pretty hard with a wave of grief and ended up in a really difficult place emotionally. I was haunted by feelings of inadequacy and guilt that I had failed miserably in caring for Ellie when all of these other parents were able to keep their children alive. I began to doubt whether it was a good idea to attend the gathering and withdrew from the planning process. The week of the gathering I decided I did in fact want our family to participate in the gathering (in large part because Mason and Brynn had heard me talk about it and were begging to go see their friends Stetson and Brooklyn and they really wanted to meet Natalie). We ended up making a quick trip down to Kansas City and got to meet and spend an evening with some of our 4p+ friends. Six families from all over the US and Canada were able to attend. This may not seem like a lot, but this was the biggest group of 4p+ families to ever assemble so it was a pretty big deal. Gabby and her family came from Iowa, Natalie and her family came from Kansas, Stetson and Brooklyn and their family came from Idaho, Nora and her mom came from Michigan, and Keifer and his mom came from British Columbia. We picked up some pizza for everyone and met at a park where we were able to mingle and play for several hours the first evening. Not quite the caliber of meet and greet dinner I wanted to plan, but it turned out well for being last minute. As always it was bitter sweet meeting all of these special kiddos and imagining what similarities Ellie might have eventually shared with some of them. I loved watching Gabby smile and laugh as she shook a container of coins, listening to Keifer talk all about Minecraft while playing on the playground with the other kids, watching a busy little Natalie get into mischief in the blink of an eye with her quick hands, watching Scott play with Nora and making her laugh and laugh, getting a giant hug from Stetson, and singing happy birthday to Brooklyn. It turned out to be a wonderful evening and I was so glad I finally got to meet some of my wonderful friends face to face. The rest of the group stayed all weekend and enjoyed going out and doing some fun things together, but we were only able to stay for that first evening.
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| Stetson, Natalie, Nora, Keifer, Brooklyn, Gabby |
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| Sarah R (Stetson and Brooklyn), Karen (Natalie), Sarah D (Gabby), Rachel, Melissa (Kiefer), Amy (Nora) |
