I was rocking my two-year-old to sleep like I did every night, and it happened. For the first time, my little boy noticed my disability. He held my small, hook-like hands next to his, and I watched his eyes as he tried to make sense of what he was seeing. He stretched his fingers out straight, and tried to get mine to do the same, but of course my fingers never have been able to bend, same as my wrists, elbows, and shoulders. He flexed his every knuckle and continued to work with mine, trying to make sense of this new discovery. After several minutes of deep concentration, he looked up at me with those chocolate eyes and said in toddler-ese, “It’s no working. Needs batteries.” I laughed at such a simple conclusion, and wished it was that easy. Another part of me wished he could have a “normal” mommy. And in this moment I first wondered what his school friends would think when they saw me. Would he be embarrassed of me? Would he defend me? Would he even have to? Time will tell.
I keep expecting that one day I’ll get used to it, but it’s been thirty years, and that day never comes. I was born the one statistic no one wants to be. Just one in three thousand babies is determined to have AMC. Two thousand nine hundred and ninety-nine babies were born “normal,” and I was the next one in line. As with any chronic struggle, there are good days and bad days. Sometimes a stranger in public tells me I’ve inspired them. Good day. Sometimes these weak arms can’t hold my children long enough, or someone is too nervous to look me in the eye. Bad day. I use my feet to do what my hands can’t, so as you can imagine, I get a lot of curious/sad/disgusted/surprised/awed looks as I go about living my life. When I’m using my foot to swipe my debit card, eat my lunch, type on my laptop, you’d better believe I draw attention. I joke (sort of) that it’s like being a celebrity, minus the money, mansion, cars… Which pretty much just leaves you with people remembering exactly where/when they first saw you, and feeling free to ask you all manner of questions about your personal life. Yeah, sometimes it really sucks.
Before I go on and tell you about all the things I actually love about being me, let me tell you a little about AMC. AMC stands for Arthrogryposis Multiplex Congenita. All it means is that I had many stiff and crooked joints at birth. Since it can affect any joint in the body, it shows up in around 400 variations from person to person. Sometimes the effect is so minor that the person can function like anyone else. Sometimes it will land someone in a wheelchair and unable to care for themselves. I was fortunate to only be affected in my upper limbs, however they were hit hard. From birth, the joints and muscles from the base of my neck to my fingertips are underdeveloped and lack strength/flexibility. My arms are about three quarters the length of the average arm (I’m very thankful for the current popularity of three quarters sleeve shirts!), my elbows are locked straight and my wrists turn under and inward. I’m not going to lie, I find them to be ugly. I think, at this point, I don’t even see my arms when I look in the mirror. For much of my life I avoided sleeveless shirts, because I didn’t want anyone to see my bony, narrow shoulders. I preferred that no one see or acknowledge my differences, but it’s so exhausting to hide. I was only able to keep it up until I was 24.
That’s when I had my first child. I had no clue how I’d carry him or how I’d feed him or how I’d bathe him… I just knew we’d work it out. And we did, but it took a little time. And much of my mothering looks like struggle to outsiders. I have my slow, clumsy way of doing things, and it works for us. But it was so difficult allowing others to watch me struggle as I fastened the car seat. As I changed his diaper. As I nursed him. I quickly learned that my struggles couldn’t stay hidden. It was no longer my little secret… so I started talking about it.
I let CNN feature my son and me in an article about parents with disabilities. I started a blog. I uploaded videos to YouTube. I wrote a book. And in all that talking and writing and showing my life to the world, I started to realize just how lucky I am.
Just by living my life in view of the public, I can inspire someone. I can encourage someone who thinks they can’t. I can help someone pursue a dream or just make it another day. My disability gives me the ability to make a difference. And that’s the only kind of ability that really matters at the end of the day. So I’ll keep telling my story, answering strangers’ creepily personal questions, and wondering what the future will bring. This disability might make life hard, but it also makes life worth living.
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(Image: Author's own)