Aside from the Botox injections, dentist appointments are quite possibly the hardest appointments. Schwartz Jampel Syndrome causes his muscles to constantly fire, making growth of his bones constricted, including his mouth and jaw. Because of that, his teeth aren’t growing correctly, because there isn’t room in his mouth for them TO grow. Because of that, his teeth are more prone to decay because cleaning them is so hard. As a mom, this appointment usually looks like me holding him like a bear hug while the dentist is all but on top of me. I walk away sweating, anxious, overstimulated, and I’m not the one with SJS. Bedford is a trooper. We do these pep talks literally all day every day, because everything - and I mean everything - is harder for him in some capacity. Hard isn’t fun. Hard isn’t easy, for any of us. None of us willingly choose the hard in life, but on the other side of it, it’s easy to look back and say, “this was worth it.” It’s the TODAY that is hard. But are we gonna be people characterized by TODAY, who push through the hard because we KNOW the end result will be better? Or will we be people who quit TODAY, because we can’t see past today? I ask myself often, “Imagine if I had curled up and said I hate that playgrounds don’t work for him”? And just sat in that? My boy wouldn’t be playing at recess. My boy wouldn’t be with friends. If his story can be any reminder, today isn’t the end. Today is actually where you need to begin. For Bedford, it’s being brave at the dentist. Right now it’s hard. Tomorrow might still be hard. But tomorrow, he is gonna be braver. And maybe that’s the message your life needs to send today. Be brave. #buildforbeddy #schwartzjampelsyndrome #rarediseaseawareness
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