While updating our blogroll links, I noticed that Megan’s blog has moved to a new address, and that I missed a letter she wrote about being a counselor at Camp Discovery.
Sometimes I think I use too many superlatives when talking about writing about ichthyosis, but I really think that Megan’s letter is a “must-read” for parents of children with skin disorder like ichthyosis or EB. It is not just about internalized ableism (which I myself am very guilty of), but also about the role of parents, about judgments regarding appearance and ability, and the role of sharing and communities… It’s really an amazing piece of writing.
Two of our kids went to camp this year, but as she described them, they are still itty-bitty baby campers. Yet even though they are little and still only there to enjoy the moments, not reflect on those moments’ impact on their lives, I can only hope that someday down the line they will have their minds blown by the experience as Megan did.
I don’t want to spoil where Megan goes in her post, but these sentences hit especially close-to-home for me:
On the second-to-last night, the girls began opening up before bed about how they had been teased and bullied because of their conditions. Every story was something I had been through. Every fear they expressed was something I still, to this day, struggle to overcome. Even the kids who presented “normally” had some mind-blowing things to say about earlier times when their conditions were in a worse state.
So stop what you’re doing right now and go over to Megan’s blog and read what she had to say about what she learned at camp.
And next year, make sure to sign your kids up for camp!
