Conversations

For almost 9 years I was dreading the day I would tell my daughter about her leg lengthening procedure. She of course knew she had a leg length difference but she never knew our plans to help her until I told her in February. It was just a couple of days before we went to see her specialist and finalize the procedure. Although it was very difficult at times during the conversation overall it went "well". I tried to keep it simple:

• I told her I needed to talk to her about our appointment on Tuesday because this time Dr. Scott would be telling us about his plans to make her legs more even this year.
• (Randomly we met a boy that had an External Fixator on his leg from a horrible football injury so I was able to say...) Remember that boy completing his Eagle Scout project with that "thing" on his leg? That is what Dr. Scott will use to make your left bone grow. It works like your braces and will slowly help the bone grow.
• I told her she had done so well with the difference. She didn't let it hold her back and she did what she was supposed to do (AFO, lift, etc.) but as we had noticed lately with her hips the difference was starting to affect other parts of her body. Her right side had to work harder and we needed to take care of her body and make her more comfortable.
• I said it is important with everything but especially this that she is open with us, shares her feelings, and asks any questions she has. Mommy and Daddy can explain things even better than doctors.
• I explained there is a happy ending to this story because we can do something to help her body.
• I showed her wonderful pictures I found on the Internet of kids living their regular life with an external fixator on their leg. (see recommended links)

She had amazing questions, strong feelings, and tears were shed by all. It was a very long conversation. She didn't clam up at all.

She admitted later that night that she was "horrified" when I initially told her but that she was already feeling better. I realized she was relieved to learn there was something we could do to help her. It made me question if I should have shared with her earlier. However, I think the timing came together very naturally. She previously internalized everything but just in the recent months she had started having wonderful conversations with me about her leg length difference and her body was physically showing signs it was good timing. She is torn between liking the leg length difference because it makes her special and wanting more even legs because things will be easier for her.

I have had 3 other really good conversations with mothers of a child who have experienced an external fixator. The conversations were extremely helpful because:

• they all provided very practical information on how to prepare and what to expect (they provided a lot of the content on this blog to date),
• I learned about 3 very amazing kids,
• I learned about 3 very neat families,
• They all love my daughters doctor,
• They were all very happy with the outcome of the leg lengthening procedure, but 
• They were all very honest about how difficult life with an extenral fixator is...

Lastly, I would like to share 2 conversations with my very wise 6 1/2 year old (non-FH) daughter:

• One day she admitted it was hard for her because her sister was getting a lot of attention now that the community knew about her upcoming procedure, and 
• Three days later she said she felt bad for her sister because she didn't understand why she has to go through the medical procedure. "She didn't do anything wrong to deserve it." (I, of course, agreed.)