Monday, May 10, 2010
Five for Ten: Supergirl
Miss M is five years old. She is a bright, beautiful, witty and charming little girl. She loves to run and play and make new friends. She doesn't let anything stop her. Not even her disability.
When I was pregnant with Miss M, it had been almost seven years since my last pregnancy and it was a totally different experience. For one, I wasn't nauseous for nine straight months like I was the last time. Everything went very smoothly and I felt great. I was having my girl. I was so happy to be having a girl. We had her name picked out before we even booked the first ultrasound. I just knew it was a girl and I couldn't wait to meet my daughter.
Miss M was a large baby (10 lbs, 5 oz) and also in a breech position, so she was delivered by c-section (thankfully!). Everything went fairly well and she was such a beautiful little baby (I'm not biased or anything)! She had inhaled fluid so we only got a glimpse of her before she was swept away to intensive care. In all of the chaos and excitement, we didn't notice her feet.
Her feet were deformed. They were turned in and almost bent in half (from toes to heel). She held her legs straight up to her head, just like the position she had in the womb. The doctors did not know what was wrong and sent her for multiple tests over the following weeks, including CT scans, blood tests, MRI and x-rays. To make a long story short, she was finally diagnosed with a condition called Amyoplasia Congenita, a form of Arthogryposis. It basically means that she has no muscle in the lower legs. One of the symptoms of this condition is clubbed feet.
At only a few days old, she started treatments of weekly casting where they slowly moved her feet and put new casts on each week to hold them. This lasted several months. Then at six months, she underwent a heel cord release surgery to prevent her toes from pointing downward. She went to physio. She had to get special braces called ankle-foot orthoses (AFOs) that she must wear everyday to keep her feet in the correct position.
With her AFOs, she learned to walk at 15 months. She was able to wear extra wide running shoes over her AFOs and soon she was running around everywhere.
As she grew, she was fitted for several newer and bigger AFOs. Last year she had another surgery on one foot that was less straight than the other and had to spend six weeks in a cast. It was difficult for all of us to have her in a wheelchair for six weeks. Here was our active little girl stuck in a chair and unable to run around. She rarely complained, but boy was she happy once that cast came off! This year, we realized that the surgery had been unsuccessful and the doctors decided to put her through more casting treatments. Which meant that she would get a new cast on her foot each week for 6-8 weeks. Not fun for a five-year-old.
But has any of this stopped Miss M? Not for a second. She is so strong. We rented a wheelchair for her and we also got crutches for her to try. She learned very quickly how to walk with them. If she can't get somewhere fast enough, she just gets down and crawls. She is not a shy little girl, especially not with other children. She is very outgoing and goes out of her way to meet new kids when she can because she just loves to play and share. I wish I would have been that way as a child, but I was much too shy. I still am. It is still not easy for me to make friends. But Miss M does it with ease.
Miss M is courageous. She knows that she is different, but she's not afraid of it. If another child asks what those things on her feet are, she tells them that she has special feet and the braces help to keep them straight. She has a disability but it doesn't stop her from doing anything that she wants to do. She finds a way. She may only be five, but she knows that she is special. She knows that the other kids at daycare are not wearing AFOs or going through surgeries. And if she is afraid that she won't be able to keep up, that her classmates won't want to play with her, that new friends won’t accept her… she faces that fear by letting her bright personality shine through.
I hope that she does not lose her courage with age. I know that school-age children can be mean and don’t understand how their words can affect a child's self-esteem. I hope that she will keep that inner strength when she starts school in September. I hope she will continue to face any fear, uncertainty or pain and just keep on shining.
My daughter is the sweetest little girl in the world and I love her so much. I wish I had just a fraction of her bravery, will and determination. She is my hero.