A Dozen Good Eggs

Wednesday, July 4, 2012

My Imperfect Child

My child is not perfect. There I said it. She is not perfect. Her body does not allow her to do all the things she wants to do. She was born with something called Arthrogryposis Multiplex Congenita. In layman's terms it means she was born with contracted joints. What is a contracted joint you ask? It is a joint that is fixed or frozen and does not move. She is affected in most of her joints.

She is unable to do most thngs for herself. She uses a wheelchair. She can not dress or undress, use the bathroom without help, bathe herself, and sometimes due to the difficult surgeries she can not feed herself.  I often wonder how she tolerates the painful treatments, the rude stares and nasty comments. People talk to her as if she can not understand. She understands just fine. It's her muscles that don't work, not her brain. I think to myself I would be a mess if I had to live like she does. How would I handle the struggles she faces? 

 And yet, she wakes with a smile every day. She tells me how she is going to help me with housework as soon as she learns to walk.  She tells her "brudders" to wait for her if they are going to play. She goes to school, learns, writes, and generally makes do with what she has been given. She never met a stranger, and makes friends everywhere she goes. She has a bubbly personality that seems to draw people in.  She does well in school and has lots of friends there.

As a parent you look forward to all the things you can teach your children as they grow. You don't think about what it will be like if you can't teach them. What if you never know the joy of teaching your child to walk?  Will it be ok? What if your child never learns to say those special words every Mama loves to hear?  Will you manage?  Will you learn to love her as she is?  If you do, you might find that even though parenting isn't as you pictured it, the person doing the learning isn't your child, it's YOU!

Our little ray of sunshine can't walk with her legs, but she takes us down many roads we may not have chosen to go on our own. She is the one doing the teaching. She leads us. Some of the many things we have learned is how to smile through adversity, to be kind to others no matter their treatment of you, to be brave when you would rather fall apart. I know I couldn't live like she does with her disabilities. I don't have the wisdom. I don't have the brave face. I don't have the never wavering smile.  She is not my first child, but she is the first child to teach me so many hard lessons I never thought I needed to learn.  Raising my imperfect child has taught me more than my college degree. It has taught me more than 40 years of life could teach me.  The next time you are faced with a scary challenge, think about my imperfect girl. She never gives up. Ever. If she fails, she tries again, she tries harder, until she reaches her goals. In spite of all the adversity thrown her way, she just keeps on trucking. It's too bad we all can't be as imperfect as she is.  Imagine what we could do if we were.


  1. I know exactly what you mean, I am raising one of those girls too. There has been much trauma and drama, surgeries, and therapy along the way and through all of it I am learning so much.

  2. This post is beautiful! I hope to be as "imperfect" as your daughter some day! She is a fighter for sure