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April 23rd, 2009, 09:08 AM
Join Date: Aug 2005
I had to laugh. Not AT the situation, but because we get this all the time. My SIL's mother is *extremely* religious, and thinks that because she's praying for Milo, he'll grow to be 6'5" like my dad. Um...it's a form of dwarfism...don't think that's going to happen. Hehe. People say stuff like that all the time to us. We don't care about his size so much-his health is obviously the most important. There are some things that have already helped, some things that will go away with time, and other things that will just get worse. I don't think that anyone realizes that it's a battle. A constant, round-the-clock battle. You don't get remission with syndromes, permanent disabilities, etc. It's just ignorance, just because they haven't dealt with it.
I do have something that gives me hope. I had the best run-in yesterday. I was in Costco (which is a way for me to take a break-a couple of hours walking the aisles, Kannon usually asleep, getting shopping done, and then back home to start therapies, etc.), and some woman wanted to look at Milo. Our conversation led all over the place, but the basics: she was a teacher who had had a child with dwarfism in one of her classes (not the rare kind, but still, someone who was small with extra needs). She told me how she and the other kids had to do different things, but ultimately, no one treated the little girl any differently. She happened to mention that BOTH of her sons have CF and are 28 and 30. I nearly cried. I'm doing all the stuff for Milo for CF and other lung problems right now. She and I talked for a long time, and I felt like she was the first person I've run into who "gets it." She knew the sleepless nights, wondering if your kid is going to make it, wondering about the future, avoiding other parents' talking about milestones, etc. Luckily, we were in an out-of-the-way part of the store, because I started sobbing at one point. She didn't even blink. She just understood. We both needed that.
Anyway, the point is, most people will never get it, but when you finally meet the people who DO understand, you don't have to apologize, make excuses, explain everything, feel embarrassed, etc.
Which is why I love this board.
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