This one is about the people I’ve met on our clubfoot journey. The ones who understand the stress, the worry, the constant scrutiny of feet. Most people sympathize but few understand.
Last week when we went to see Dr Fluffy Unicorn, he asked me to call a momma-to-be who will be joining the clubfoot club soon with the arrival of her baby boy in two weeks (so if you’re reading, hello and welcome!). She’ll be using Dr Fluffy Unicorn and he had told her about Sporty so he asked me to touch base with her and talk to her about treatment and all of the fun {insert sarcasm} feelings that go along with being told your baby has a birth defect. We seriously talked for an hour and could have talked forever but she had her 3 year old home and I had to be a little productive while Young Jedi was at school so we parted ways after an hour. It was a great conversation from diagnosis, to what to expect in treatment, to special clothes, to Dr Fluffy Unicorn. I’m so glad we were able to connect and I really hope I set her mind at ease a little. Her little boy is really going to live a good life, just like Sporty. And I really hope that we’ll meet in person one day!
But it got me thinking about all of the people I’ve met along the way and how important each of them has been on our journey.
There’s my friend in Virginia who was probably one of the very first people who reached out to me when I was still pregnant with Sporty through a yahoo support group. Her little guy is about 6 months older than Sporty and she really got me through those first years, first casts, brace years, tenotomy. We’ve even been lucky enough to meet in person when Sporty was about 15 months and had just taken her first steps. She seriously got me through those first few years sane, without her, I may have cracked under stress and she’s still one of the first to be supportive or sympathetic of Sporty and all of her accomplishments and set backs.
Then there’s my wonderful friend in San Jose who’s clubfoot son was born on the same exact day as Young Jedi. We’ve only hung out a few times, FaceTimed a few more, but she’s my sister from another mother. I keep trying to convince her to move closer so the boys can go to school together and we can hang out!
There are so many more of them, so many that I can’t list them all. Many of them I’ve never physically met but we know each other, we’re friends on Facebook or Instagram, we know each other’s triumphs, each other’s struggles, we cheer for each, we are sad with each other with set backs. We worry for each other when they have their foot check-ups.
Lots of people always say, “oh clubfeet! it could be so much worse.” It’s true, it could be worse, but it could also be better. It’s “just” their feet I’ve heard, it could be so much worse. Yes, I know this very well, but your feet carry your body, they determine how you enter a room, they set the pace. I know each kid has their own struggles but for us in the support group, we understand our daily struggle. We understand the fear of relapse, slipped casts, putting a brace on at the end of each day, the worry of pain later on in life and because we live it, we have our own little community full of support. We understand how much more those first steps mean, how far our kids have come when they take the soccer field, football field, or softball/baseball field. We understand why a simple run can mean so much. And we understand how quickly a corrected clubfoot can relapse. So while clubfoot isn’t necessarily a group I would have volunteered for, the friendships and the community have made it a group I rely on, it’s a community that keeps each other going.