It has been a full and wonderful week as long as you don’t include the part about our refrigerator dying on the day we left for a trip! But if that was going to happen then it is really wonderful that Grandpa was around to save the day and throw out all of the food before it got too stinky.
Amy had such a fun time at her sleep-away camp that she wants to go again next year for twice as long. She assures me that I will survive without her.
I took Sarah, Amy, and two of Amy’s friends to Sandcastle for a day. That’s a water park that has a lot of tame pools that Sarah and I can enjoy and some slides and rides that Amy describes as “terrifunning.” The weird thing about Sandcastle is that it seems like whenever we leave, my car just drives to Brusters and makes us get ice cream! I know my car has its quirks but this one takes the cake! Or the ice cream. (We go there because Sandcastle doesn’t have a Sarah-friendly dairy-free ice cream option.)
Our aforementioned trip was to Texas for Higgy Con! As with the conference for Sarah, the location moves around each year. This year the conferences were both in Texas. Amy has been eagerly anticipating Higgy Con since we attended last year. Higgy Con is to celebrate and support kids with scoliosis. It is run by Higgy Bears, a non-profit that provides stuffed animal bears in back braces or with surgery scars to those kids newly diagnosed with scoliosis or just out of surgery. There are also Higgy zooms and local Higgy Friends events, all to help kids feel supported and that they aren’t alone. It has been life-changing for Amy and our whole family. The whole Higgy experience helped Amy go from trying to hide her brace to wearing it proudly on the outside of her clothes.
A year ago, Higgy Con is where we first learned about the Whisper Brace. Amy’s first brace was made of hard plastic so it was hot and made it hard to move. The Whisper brace is made of smaller pieces of metal and plastic. It still puts pressure on the spine but is breathable and movable. The few times Amy has needed to wear her old Rigo Cheneau brace while the Whisper was repaired, she hated it. Then when she would get the Whisper brace back her face looked like it was Christmas morning when she was five. It was just the best thing ever. To feel that way about a brace is incredible.
Green is the color of scoliosis awareness so Higgy Con is a sea of green. During the day the kids play games and do crafts while the adults listen to talks by various specialists and other parents and teens. One night there was a dance party and the other night all of the kids participated in a fashion show. Amy wore the jean skirt and jean jacket that she painted. The back of the jacket shows a curving spine. Amy and Sarah walked the stage together, giving high fives to the adoring fans all along the border of the stage.
What astonishes me is that doctors aren’t providing all of the information to their patients that we get at Higgy Con. I know I could have researched different braces, but I wish that doctors could explain that there are different kinds of braces and different kinds of surgery. That’s important information! I hope that more doctors can learn about Higgy Bears and similar support groups such as Curvy Girls and Scolios-us. These groups make a huge difference for the kids and parents. Parents often feel guilty for not noticing the scoliosis sooner or for not knowing more about the different treatment options. It’s important to have a place for parents to connect, on zoom, social media, and in person, so they can learn from each other and realize they aren’t alone in their experience or emotions.
May you feel supported for any medical or refrigeration situation.
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