Amy is now the owner of a Whisper brace, and it is a harder adjustment than we anticipated. Somehow we thought it would only be better than her old one, not thinking about how it would be pushing in new places because she has grown and changed since she got her old brace. Just like with braces for teeth, any adjustment can result in a few uncomfortable days. The brace fitting itself was also challenging with being squeezed and pushed a lot and in new ways as the orthotists got everything contoured exactly right and taught us what we needed to know. What was beautiful was that upon receiving the Whisper brace, Amy was given a Higgy Bear wearing a Whisper brace. Higgy Bears is a non-profit that provides stuffed animals with various kinds of braces or surgery scars to kids all over the country when they get their brace or arrive for Schroth therapy or their surgery. Higgy Bears also has zooms to connect kids all over the country who are a similar age and have a similar situation. It is an incredible community, and I believe it is changing the experience of kids with scoliosis one bear and zoom at a time. Even though this wasn’t Amy’s first brace, given the emotional challenge of the appointment, it was still heart-warming to receive a small fuzzy friend and letters from other kids about their experiences – and letters from other parents too. At the moment when you might be feeling very weird and so different from many of your peers, you are welcomed into a community of people just like you. Higgy Bears was started by one person and is a testament to the incredible influence one person can have. I feel teary with gratitude each time I think of it. Without Higgy Bears Amy would feel so much more isolated on this journey. With Higgy Bears she has many friends walking on the same path, which is why she has felt ever more comfortable with people seeing her brace and knowing that she has scoliosis.
Last Sunday Carl took the girls to Simmons farm to get pumpkins and play. In addition to the usual very long slide and large hamster wheels to play in, this year there was an old school bus with bins of dried corn kernels. Sarah was in heaven. There were also large plastic pink pigs to ride, which Amy enjoyed.
Sarah was excited for each school day, even more than usual, because it was spirit week at her school. That meant themed dress-down days! Monday was for house colors, a la Harry Potter houses. Tuesday was beach day and Sarah took full advantage of being allowed to wear shorts, despite the chilly temperatures. Wednesday was pajama day, which is probably her favorite day of the whole school year. They also got a special breakfast at school. Thursday was a Time Machine day so the students were to dress like they were from the past or future. I always find such a theme challenging. Our solution was for Sarah to wear a shirt from her old school. Sarah was quite excited about Friday because it was School Spirit colors for the pep rally, she went to one of her school jobs, and that evening she and Carl went to see Blippi live.
Wednesday morning Sarah and I woke at maybe 2 AM and were awake for a couple of hours. Carl was out of town so Sarah was next to me in bed. She started talking about having a cold and her nose hurting. At this time of year it is always hard to tell if she is getting a cold or having fall allergies. That night I had put an antique quilt on my bed and our cat was by my legs all night. Both the quilt and the cat could have contributed to Sarah having some congestion and allergies. Eventually we went back to sleep and she seemed fine in the morning so happily went to school. But! This experience highlighted a pattern that I experience every time I think either kid might be getting sick. I am filled with adrenaline and anxiety and so even if they fall asleep easily, I do not. I was so glad I had an Option dialogue scheduled for Thursday to help me explore this emotional roller coaster I go on. I have talked to other mothers who say they experience similar things, and while camaraderie and community are helpful, I didn’t want to brush off my experience as just a normal mom thing, because I don’t want to stay stuck in that pattern. During the dialogue I realized that I really believe worry will somehow keep me safe and that relaxing and anticipating good things might invite disaster. I also believe that worry may bring bad things and that relaxing and anticipating good may bring good things. So I get myself coming and going, leaving no room for me to just be me, because I’m too busy feeling responsible for my small world – as if my worry or lack thereof is where the power is. I have not solved this yet for myself, but it was really helpful to see it all out in the open. In my idle moments I now look back at my life for evidence of good things happening when I wasn’t worried, and I remind myself that I don’t have control over so many of the things I wish I could control. I cannot actually control whether people get colds, aside making sure our lifestyle is healthy. Accepting my lack of control does help me relax because then I’m not desperately reaching for secret magic worry spells to protect me and my loved ones.
Lots of love to all of you. May you breath freely and with support even if you are being squeezed by a brace or by worry.
Leave a Reply