i forget

I wrote the following piece in 2008, 9 years after my daughter was born with arthrogryposis multiplex congenita (AMC).  I am bringing it back because June 30 is Arthrogryposis Awareness Day. 



A weird thing has happened to me.  I have seemingly forgotten that one of my children has a disability.


If you’ve read “Lucky,” then you will know that when my daughter Ally Jane was born in 1999 with arthrogryposis, her condition—what it meant for her health, her abilities, and her future—was pretty much all I could think about when she was very young.  But now that she’s gotten older (it’s August 2008 as I write this), I hardly notice that she has—and will always have, apparently—a handicap.


One reason, of course, is simple desensitization.  I’ve lived with Ally for so long that I’ve stopped seeing her as strangers would.  To me, she’s my daughter Ally, not a child with disabilities.  I don’t remember when was the last time I explained her situation to someone.  I’ve become blind.


Another reason is that she’s made so much progress.  When, as an infant, she had her clubfeet corrected, the orthopedic surgeon thought that he was doing just so she could wear shoes: he had little faith that she would ever be able to stand or walk.  Not only did she learn to do both, but she also learned to run, to jump, to skip, to dance, to swim, to ride horses.  As a matter of fact, it was years of therapeutic horseback riding—administered by her therapist, Marco Belperio—that has built up her strength.  When she started the program, she couldn’t walk very far or very long without tiring.  Now, she walks most of the time when we go on all-day outings to amusement parks or the zoo.  When she tires, I carry her on my shoulders, like a lot of dads do with their small children.


“Small” is the operative word.  Because arthrogryposis limits bone and muscle growth, Ally is very small for her age: at the age of 9½, she stands just over three feet tall and is perhaps 42 pounds.  I notice that she’s small, of course, but unless I stop and think about it, I never make the connection that it’s because of her disability.  I just see her as a “little kid,” and I tend to still think of her as a “little kid”—even though she’s a tween.  She’s starting fourth grade in the fall, and I remember fourth grade very well.  She’s not so “little” any more, but it’s hard for me to remember that.



Ally Jane, 2008



It’s not entirely possible to forget, of course.  Every once in a while, something happens that reminds me of Ally’s condition.  For example, this summer, she started taking showers, and at first, we had to wash her hair.  With her limited shoulder and elbow mobility, it was difficult, at first, for her to do it herself.  But she learned how.  I help her get in and out of the tub, but I imagine that soon, I won’t have to do that, either: she’ll have learned how to get in and out safely.


The fears and worries that I had many years ago, when I wrote “Lucky,” have not come to pass.  She dress herself, feeds herself, brushes her hair and teeth.  She has lots of friends—to the best of my knowledge, no one makes fun of her or picks on her.  The only jealousy she displays concerning her older, able-bodied sister is that Beth gets to stay up later than she does.


She goes to school on the “regular” bus, she was a Brownie Scout, she gets straight “A’s,” she loves to swim and climb trees and do art projects and go on rides whenever the carnival comes around.  It’s only when I look at a photo that I notice that her knees and fingers don’t straighten all the way, or that her arms and legs are very thin.  Other than that, I forget.


Update: 2013


I was acutely reminded of Ally’s condition in 2012.  Ally’s right knee had been giving her trouble for a few years.  She had to give up horseback riding therapy and took up swimming, which was easier on her joints.  Occasionally, her knee would dislocate, and while it was very painful (and initially scary) for her, it usually went back in place by itself.


In 2011 and 2012, Ally Jane’s knee was dislocating more and more often.  In Spring 2012, it popped out while walking across a parking lot and it didn’t fix itself.  We had to take her to Children’s Hospital in Washington, DC to have it put back in place, without surgery, fortunately.


She decided (and we agreed) that this couldn’t continue.  We consulted doctors, but most were hesitant to operate, fearing damage to her leg’s growth plate or unsure of its success.  One thought was that she be in a wheelchair until she had finished growing, and then do an operation.  We wanted to keep her on her feet, however, as once you stop moving, it’s hard or even impossible to start again.


We consulted the arthrogryposis clinic at A.I. duPont in Delaware and a surgeon there successfully operated on Ally’s knee, securing it so that it will not dislocate.  It’s been just over a year since her surgery, and Ally walks fine, with no further problems.  She has a very large scar on her knee, but she is not troubled by it and is very glad to have had the operation.


Ally Jane at the Rock ‘n’ Roll Hall of Fame, August 2012



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