What a time we have had! A little over a week ago, we got a ride from Sarah’s favorite taxi driver to the airport, ready to board a plane to Chicago for Higgy Con, a conference for kids with scoliosis. We were decked out in custom-made shirts that say “I’ve got your back Amy” for scoliosis awareness, with a list of family and friends on the back. I think we needed an extra suitcase just for Sarah’s joy at being with her bus driver and Amy’s joy to be attending Higgy Con.
Higgy Con was so much fun! Amy spent every minute she could in the kids’ room where they played games and talked with other kids about their experiences. Amy was at a table of other kids her age who also wear back braces. There was a panel of teens and a panel of parents sharing their stories in the parents’ room, and the teen panel also spoke to the kids. The parents could attend presentations from various specialists and speakers. Amy made a new friend and I connected with the mom of that friend. We also learned about the Whisper Brace, which is relatively new but sounds amazing. I’m going to pursue getting one for Amy. Instead of being made of rigid plastic, it is made of more flexible material but still applies pressure where it needs to be to push against the curves. Kids who have Whisper braces can do backbends and cartwheels in their braces! (Assuming they could do such things before getting the brace.)
Another highlight of the weekend was the fashion show. Each kid dressed in as much green (the color of scoliosis awareness) as possible and walked the runway while the announcer read what they wrote on a card, such as their name, age, and how long they had been wearing a brace or if they had spinal fusion surgery. It was beyond wonderful to cheer for each kid, what they have been through, and how courageous and strong they are. The whole conference takes something that could make someone feel different and isolated and celebrates them as part of a community. Later in the week, Amy celebrated her one year brace-a-versary August 2, decorating her face with pictures of curved spines.
One night I woke to Sarah talking in her sleep. When I got closer to her I heard “traffic” and she moved her arms as if she was driving! A second later I heard Amy talk in her sleep, whispering quietly, “so cute!” Maybe both girls were dreaming about their favorite things - Sarah loving being stuck in traffic and Amy loving her cat.
After a packed weekend full of smiles, dancing, and more green that I have ever seen, we wrapped up our Higgy Con time, piled into our rented neon green car (an unexpected bit of delight), and drove to see a college friend and his family. Sarah loved the baby and Amy enjoyed playing with the almost-two year old. Carl and I also got our fix of baby snuggles. Then we drove to Milwaukee for a short visit with some family members while enjoying ice cream on Pittsburgh Ave! We got into Minneapolis late that night.
Our Minneapolis Airbnb was around the corner from the house Carl lived in through 5th grade. We had two days to explore the Carl Childhood Sites, but were surprised not to find any plaques commemorating his time there. Grandma joined us for one of our days. We spoke to the current owner of Carl’s old house, visited with the parents of his bestie from that time, played on the playground where he played (with new equipment of course), and ate delicious Vietnamese food. We napped, and we got ice cream from a place that had a sign declaring that they didn’t rent kangaroos. We watched the Olympics. We went to Minnehaha Falls, and Carl got interviewed by someone doing a news story about a restoration project - and he was on the evening news! So was Sarah for a second. We went to the sculpture garden. We went to a lake beach for about five minutes before the heavens opened with thunder, lightning, rain, and hail. We had dinner with family friends and took a picture of Amy sitting in very small chair that she last sat in as a baby.
Our next adventure was flying to Denver for the conference to celebrate those with Sarah’s diagnosis, attending talks and parties, and just being together. The conference opened with a slide show with a picture of each special kiddo (or adult) attending so we could all cheer for what mountain they climbed in the last year. Sarah’s mountain that we honored was persevering through all of the rehearsals and being in her school musical, All Shook Up.
Sarah loved being in the kids’ room watching her favorite shows and movies with other kids. Amy spent some time in the kids’ room doing art, some time listening to a sibling panel, and she had fun at the sibling event at Dave and Busters. The friend she made last year wasn’t here this time but she made a new friend. I connected with a mom I met last year whose daughter is older than Sarah and got some ideas for Sarah when she finishes school.
This is not an easy road and we are so lucky to only have the challenges we have. Sometimes this can all just feel too hard, and yet the best antidote for that feeling is for me to spend quiet time with Sarah. The overwhelm I feel is often pertaining to how to keep her healthy and fear for the future. I also have frequent frustration and helpless feelings regarding our control battles or her explosive feelings when Amy is in the bathroom. At least at the conference I felt less anxious when Sarah screamed in our room because I knew many hotel guests would understand. I think Sarah and I will both benefit from some naps and snuggles when we get home.
I am so glad the timing worked to attend both conferences. Both were informative, heart-filling, emotional, and a bit tiring! I think we will all be ready to have some time at home. We fly home today and will be met by Sarah’s bus driver.
Lots of love to all of you. May you have a moment where a whole room is cheering for you and how you face your challenges.
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