As a kid, I never went to sleepaway camp in the summer. In fact, I didn’t really know it was a thing until I was an adult and I heard other parents sending their kids to camp in the mountains for a week. It sounds like great fun for all. The big kids get to go away for a week, meet new friends, and do a variety of outdoor activities. The parents get a week break from yelling at the big kids to get outside and off their technology. Sign me up!
As Courtney and I were thinking about our week with just the two little girls, we wanted to do something fun… something we would have done with the two big kids when they were little. The camp they went to was near Greenville, SC. In October of last year when we were in Chicago at our first Schaaf-Yang Syndrome conference, we met two wonderful families that lived in Greenville that had children with SYS. We had never been to Greenville and decided we would go down and explore and see if we could meet up with Hayden’s SYS friends, Isaac and Katie, that she met last October.
Any vacation that we go on needs to have every waking minute under a plan, so we don’t waste any time and we maximize fun (insert Courtney’s eye-rolling). After some research, I found that Greenville had a quaint little downtown zoo and a great children’s museum, a first for both Camryn and Hayden. In addition, we planned dinner with Isaac’s family one night and Katie’s family the next night. We had a great time at both the zoo and museum. Hayden loved seeing the animals at the zoo, especially the monkeys. Her favorite part about the children’s museum was the water table, she made a mess and smiled the whole time! However, this post isn’t about the zoo or the museum, it’s about the real reason for the trip… friendship and community.
One of the challenges of having a child with a rare disease is feeling isolated and alone. Your friends don’t fully understand what you are going through and it’s hard to talk about what you are going through. Frankly, sometimes you just don’t want to talk about it. However, having friends that are going through the same thing you are, experiencing the same things you are, and struggling with the same things you are is comforting. You feel free to talk about your challenges because you know they have them too.
Getting to see Isaac and Katie was the highlight of the trip. Seeing the progress both have made, hearing from their parents on the successes and failures they’ve had with therapy, and seeing the joy they have in their lives gave us hope. This thing called life is hard, but having friends to help you through it makes it easier. We were never meant to do this alone.
Isaac’s vocabulary was fantastic, and he and Camryn played with each other like any other toddler would. My favorite thing about Isaac is he will lead a crowd of any size in “We Will Rock You”! Katie is as sweet as they come. The highlight of my trip was when I was sitting in the basement playing with a puzzle with the kids, Katie walked right to me, looked me in the eye, and then sat in my lap and cuddled up with me. Tears of joy. God made these children special; they are here for a purpose. I just hope we can make that purpose clear to others through our work with Faith for Hayden.
Karen, Salem, Laura, Nick… Thank you. We are in this together and we are glad to be in it with you.
With love,
Matt
