So the NMF has added an online shopping cart system to their website. Previously, to order materials, you had to just print out the form or call.
In 1984, my parents wrote a book called How John Was Unique, a children’s story to help springboard families’ discussions of the hard facts of Marfan syndrome: the pros and the cons, etc. It was published by the NMF (US) as a coloring book, both to save money and to make it more interactive.
Well, somewhere along the line, the Canadian Marfan Foundation as put out a book called A Very Special Mouse.
Last week, among other items, I ordered a copy of the mouse book and “my book” (also 2 t-shirts and some informational materials to give to people).
They came on Saturday, and, without bias, I can say that my parents’ book is much better.
The mouse book basically says, “There once was a family of mice. One mouse was taller and slower than his brothers and sisters. He couldn’t see very well, either. One day he went to the doctor, and the doctor said he had something called Marfan syndrome. That’s why he was so tired all the time, so tall and he had to wear glasses. We’ll tell you more when you’re older.”
It’s almost like they wanted an alternative to my parents’ book for those parents who like to stick their heads in the sand.
So I sat down with my little hyperactive 3-year-old and tried to read her the book. She was about as impressed as possible, for a child of the computer and video camera era, that there was this little book written by Nana & Papa about daddy, and that the drawing of the boy in the book was daddy.
But when I got to the core parts, about the hospitals and tests and glasses and such, I was able to say, “Remember when you had this test done?”
And she said, “Yeah.”
And I said, “Well, this is about when I had it done when I was little.”
“Oh!” she said with a smile.
Now, if only I could get her to wear her glasses. . . . .