I wrote the following piece in 2000, the year after my daughter was born, as a “Letter from the Editor” for a newsletter I worked on at the time. The photos, except for the last one, are from that year, too. When I started kentonkilgore.com in 2006, I put this piece on the site and am bringing it back because June 30 is Arthrogryposis Awareness Day.
My younger daughter, Ally Jane, was born with arthrogryposis. It’s a rare muscular/skeletal disorder that results in joint contractures and visible deformities. There are many different varieties (making an exact diagnosis difficult) and many different causes. Many doctors have never heard of it.
When Ally was born, we could tell right away that she had problems. Her jaw was very short, making her wheeze, and her head tilted to one side. Her arms were drawn up tight against her chest and she had difficulty moving and straightening them. Her hands were clenched so tightly that we had to pry her fingers open. Both hips were dislocated. Her legs were crossed, her knees would not straighten, and she had clubfeet.
Ally has been in physical therapy since the day after she was born. She has spent weeks in casts to help straighten her knees and recently had reconstructive surgery on her feet. Though she has a mild case, doctors are not 100% certain she will ever walk.
Arthrogryposis is not fatal, nor is it degenerative, but it does pose significant obstacles for those who have it. Muscles do not grow properly, so performing simple tasks is a fatiguing challenge. At 17 months, Ally has only recently learned to roll over by herself. If she lies on her stomach, she cannot use her arms to push herself off the floor; hence, she cannot crawl. She gets around by “scooting” on her butt: sitting upright and using her heels and her hands to push herself forward.
Despite braces and physical therapy, her hands do not yet open all the way (though they are much improved). Her head still tilts to the left because of the shortened muscle on one side of her neck. Mentally, she is very bright. She seems to hear, see, and speak normally for a child her age.
My wife worries about the present: is Ally breathing okay? Is she gaining enough weight? Is she seeing the right doctors? I tend to worry about the future. I worry about how she’ll bathe herself, dress herself, feed herself. I worry about kids in school teasing her. I worry about her feeling jealous of her perfectly healthy older sister. Given our society’s emphasis on feminine beauty, I worry if Ally is going to have trouble getting dates. I worry about if she’ll ever be able to have kids, and if not, will she be able to accept that?
One thing I don’t have to worry much about is paying for treatment for her. The health care we have has paid Ally’s extensive medical and therapy bills. The Muscular Dystrophy Association doesn’t cover arthrogryposis, so Ally isn’t one of “Jerry’s Kids,” but that’s okay: the Shriners have recently accepted Ally into their program for children with disabilities. She’ll receive free medical care and equipment until she’s 21. Already, they’ve bent over backwards for us, with no strings attached.
Recently, we took Ally to the Shriners Hospital in Philadelphia to have her examined by their doctors. While we were there, we met other children with disabilities, and spoke to their parents. One in particular stuck with me. I didn’t ask what condition he has, but as we spent some time with them in the waiting room I noticed many things about him.
He was confined to a wheelchair. His head bobbed back and forth and he didn’t seem to be able to control it. He slouched forward in his chair—perhaps he was unable to sit up straight. He seemed unable to speak. He was no bigger than my 11-year old goddaughter, so I was surprised to hear that he was 17. He didn’t seem to be aware of anything around him: when Ally scooted up next to his chair and looked up at him, he made no response.
As we sat there with him and his mother, I began to think about what life for him must—and will—be like. I don’t think he will ever be able to care for himself–feed himself, dress himself, bathe himself. When I was 17, I was living on my own and about to enter college—I don’t think that’s ever going to happen for him. I think he will live with his parents until they die or are too old to care for him—and then I think he will go to an assisted living home.
Meeting that boy and his mother made me realize how lucky I am to have Ally. Spending your days off going to hospitals and doctors is no big deal when you consider how many hours a day his mother must spend taking care of him. And despite her disability, I know that Ally will be able to go to school, have friends, get a job, live—if not a “normal” life—a functional life. She may have problems, but I think she will be able to cope with them. And I don’t think I will have to worry about how Ally will do after I’m dead. She will have learned a lot, be able to do a lot for herself, and she will have her big sister.
I don’t know what the boy will have learned, what he will be able to do, whom he will have.
Many other parents of disabled children have told me that they, too, feel lucky, no matter what conditions their children may have. Someone whose child has Down syndrome told me they feel fortunate because their child can walk. And someone else whose child has cerebral palsy said that at least CP isn’t a degenerative condition: their child may not get “better,” but at least they aren’t getting worse. Someone whose child was born without a hand told me that they’re happy because at least their child can learn to write with the hand they do have. And so on.
My baby daughter has arthrogryposis. And we’re pretty lucky.
In 2006, when kentonkilgore.com debuted and I posted this on my site, I added the following:
Since I wrote this piece, Ally’s condition—thanks to surgeries and physical therapy—has greatly improved. She walks, she talks (actually, she won’t shut up most of the time). Her head no longer tilts. Her vision and hearing are fine, she’s incredibly bright (reads above grade level and is excellent at math), and is very artistic (she’s constantly drawing and painting and making crafts). She has lots of friends. And she not only walks, she runs, hops, even dances.
We’re damn lucky, I say.
Since 2006, Ally Jane has gone on to accomplish many more things. So many that…well, I’ll tell you about that next time.