February 29, 2016


So far, Anna has been able to do most everything other kids her age can do. But as she's getting older, I've noticed that children are starting to surpass her in certain ways. The other day, at a friend's house, the kids were all playing tag. The ground was sloped, which made it especially hard for Anna to run on because her foot doesn't bend which makes her unsteady climbing up a slope. I saw her chasing and chasing but she just couldn't keep up with her faster counterparts. I saw her get tired more quickly. Even though she had a smile on her face, my heart broke. I wanted to help her, to make her go faster like the other kids. I wanted to encourage her. I just wanted to 'fix' it. I decided not to say anything after, except that it looked like she had fun playing tag.

She said, "I was the only one who didn't get to run away from anyone! I had to catch everyone."

I paused and thought about what I should say, or not say. I told her that sometimes things like running fast are a little bit harder for her than the other kids because of her leg, but that she did a great job. I wasn't sure if I should have just listened to her and not brought up her leg... I struggle with knowing whether I'm focusing on it too much or whether it's a good thing to acknowledge her difference and help her frame it in a positive way. These are the questions I ask myself and will continue to ask myself as she grows and has more questions and situations arise.

She is starting to notice some of her limitations and that certain things are going to be a little bit different for her. When I think back to my own childhood, so many vivid memories arise of times when I struggled, and my sensitive nature made these times especially difficult. Ben says it's important not to project your past experiences on to your children, and he's right. But it's hard. I wish she could run like everyone else. Most of the time I feel proud and thankful for Anna's differences, but there are those moments when I wish she didn't have to struggle. This is a seemingly small incident, but it reflects the future in that I know there will be many more bigger hurdles to come. And she can overcome them. I just have to learn the best way to support and encourage her. It will take courage, support, and guidance. I pray that God will equip me with the wisdom and strength to guide my daughter- to know when to be there for her; when to talk and when to listen.


David said...

Hi Lisa, I just came across your blog. I was born 65 years ago with FM on my right leg plus club feet on both legs. Casts solved the left foot problem. I had numerous leg lengthening surgeries from ages 2-11 or so. Ultimately I ended up with a 3.5" leg length difference with a much smaller foot (size 6 versus 10.5), no real calf muscle and an ankle so thin I can wrap my thumb and index finger around it. But, I was the middle of seven children and had parents who encouraged me to keep up with my five brothers and one sister. I played a ton of competitive sports (without a right shoe build up) with my only dumb move being trying to ski where I broke my ankle my first time going down the hill. Today I continue to play tennis and golf at a pretty high level. The key for me was my parents encouraging me to do whatever I wanted but telling me that the key for me to winning, not just competing, was to find ways to play smarter. I was never going to be the fastest or the strongest but if I "played smarter" I could win. That lesson carried me through sports, school and a very successful business career. And, for 38 years I've been married a a beautiful woman who saw past my disability and who still says "he had potential".

My only advice with your beautiful daughter is to not baby her and to let her run free and push herself to be the best she can be. Please instill in her an "I can do this" attitude and that falling and even failing is just part of the process.

This may sound strange, but deep down I believe that the success I have had in life owes a lot to my having had FM. With encouragement from my parents I learned to not just want to play sports with the other kids but to find ways to win.

I'm very involved with, and frequently visit, a school in Tanzania for children born with severe physical disabilities, many similar to FM. These children were born into extreme poverty, living in mud huts with no access to medical care. Like me, your daughter is blessed to be born in a country and to parents who can provide the love and care to make a huge difference. While I certainly wish that I had never had FM I consider myself to be one of the luckiest guys around.

claudia sandoval said...
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