“When I grow up I will create a bone made out of metal that can grow”. That’s what my son was telling me about at breakfast. That shows how having fibular hemimelia has not limited his life. In fact it has expanded his consciousness, and mine, and my family’s and our communities. Truly how could he possibly think of this amazing invention if he did not feel he was a bit of a bionic boy already.
Nicholas will be having his third leg lengthening and reconstruction surgery in January. We knew this was coming but it is coming a bit sooner than we expected. So far we are all going into it with as positive an attitude as is possible. Nicholas especially! He requested that his surgery not be at christmas and not be during summer break. His doctor, Shawn Standard at the Rubin Institute for Advanced Orthopedics in Baltimore, takes Nicholas’s emotional needs into account as much as his physical needs. Since Nicholas will likely be in an external fixator for about six months, starting in January should make his summer relatively fixator free… maybe not cast free but fixator free.
Letting Nicholas have a say in what happens to him and when, helps him to feel like he is part of a team that is working for him, not doing things to him. Without this point of view I doubt he’d be dreaming up inventions to help others with bone deformities in the future. Even if Nicholas does not create a bone made out of metal that can grow I am sure he will help others with fibular hemimelia. In fact, thanks to facebook groups and blogging, just by being himself and living his life, he already has.