Just as parents and kids with Autism will always be in the world of autism we will always be in the world of Fibular Hemimelia. My daughter will always be associated with it- I will always be a mother of a child with Fibular Hemimelia.
I am called back to the day when I first heard this label. It was February 20th, 2006. At the time I don't know if I could have identified a fibula on a map if I tried (thinking of those high school students now who don't know where Georgia is). Dr. Saliman said, "Let me tell you what it is called and then I will discuss the treatment..." I grabbed a pen and paper to write it down. Geez, now it is part of my daily vocabulary!
My daughter has one fibula. She now only has one foot. 5 toes. "Madeleine, how many fingers am I holding up?" "Count your toes!" Woops, we are missing some.
When Dr. S told us that many children with FH have missing toes I was horrified. Such a silly thing to be horrified about! I remember my friends, Megan and Serena, who worked in a hospital telling me about a man who had only four toes. I thought about how my child would be the one that the nurses talked about. How kids would notice she only had four toes (or three) and make fun of her in her little sandals.
When Madeleine was born with five toes I saw it as a victory. Ha, you doctors! I made a child with all ten toes! Her foot is perfect! FH, my ass.
We amputated. We took off her perfect five toed foot. I never, well almost never, regret this. I see my daughter walking around, I see her climbing stairs, I see her squatting and standing back up, bending over, lifting her leg and I never regret taking off her foot.
When I am rocking her to sleep in the middle of the night, which happens more than I'd like to admit, I am reminded of that perfect little foot. Sometimes I am surprised that that her foot is gone. Crazy. In the middle of the night in my sleepy haze I will see that short leg sans foot and for a quick moment I will be surprised. I will wonder where that foot is. I will be horrified. And then I remember and still there is little regret.
I miss it though.