My Story

I was born with Arthrogryposis Multiplex Congenita (AMC). It is a rare congenital disorder that is characterized by multiple joint contractures and can include muscle weakness. A non-progressive disease that derives its name from Greek, literally meaning curved or hooked joints. AMC has affected all four of my limbs. My hands are bent at the wrists but I have decent strength and mobility. I can’t make a fist or high-five {a secret dream of mine} but I can write, type, put on makeup, etc with the use of my hands. How I do things might not be the same as the average person but throughout the years I have found a way that works for me.

I was born with clubfoot {check out post Clubfoot Stinks} and my left leg was not completely straight at birth. Through lots of childhood operations they have positioned things as correctly as possible but the strength is not there. I’m assuming that all the stretching of muscles and tendons is partly to blame.  I use crutches to get around but can go short distances without them. I typically don’t use my crutches around the house but I’m not brave enough to test it out in public.

I spent my whole life wanting to be normal. Over the years I have learned that doesn’t exist. We all have something that makes us unique, that we wish we could change or that we think falls short under our self concocted definition of perfection.

So here I am interested in the other side of me and the people I could be meeting, learning from and maybe even helping. When I was pregnant with my son I found very little on being pregnant and having AMC. There is much more out there for those who not disabled and pregnant with a baby affected with AMC. However, I’m sure those parents out there with a disabled child wonder and worry what life will have in store for them. I would love to offer hope that all things are possible and there is so much good to come. I am happy to share some of the things my parents, therapists and family did that I think were instrumental in making me a self-sufficient happy gal.