Fibular Hemimelia Forever


Tonight Nicholas got an award for most improved swimmer (10 and under). This award was based on improving your times. While Nicholas might not have looked like a winner in terms of meets individually (he was often in last place but altogether the team was the division campions!!!!), he was absolutely a winner in the way that matters most. He worked hard and he improved. I think he had fun too.

I don’t know how much his leg affects swimming, Nicholas once said “Fibular Hemimelia does not matter in the water”. I suspect it does matter some. His foot not flexing must matter. Or I would think so but I am not much of a swimmer so feel free to correct me.

When he started swimming his knee was still clicking. Nick has his second eight plate which will help what is called dynamic valgus. The first few days of swim practice Nicks knee bothered him and his leg was hurting. Of course I had a moment of panic wondering if this was a good idea but within a few days the pain was gone. He has not complained of pain at all since. I am wondering if the swimming increasing his strength maybe gave his knee more support.

In any case Dr. Standard was excited when I told him Nick was on the swim team. It has proved to be a wonderful thing for him and his sister and brother. This is a fh blog so we wont go into the fact that Charlotte would not put her head in the water last summer and now jumps in and is a super confident swimmer and Chris can swim! Before the team he couldn’t.

Before the kids joined the team I didn’t know they could. I thought you had to qualify. I thought they wouldn’t be good enough. I was so excited to find out (from some kind and encouraging neighbors) that how good they were or weren’t didn’t matter. Their team, The Arden Sharks, was remarkable. The head coach Chris was very encouraging but at the same time he did not treat Nicholas any different. That’s hugely important. Nicholas was just another kid on the team. Chris is Nick’s first coach and for that I am grateful. It has been a great first foray into athletics. If it is his only foray into athletics that will be fine with me but he has been talking about trying other things. The confidence he has gained warms my heart.

All the volunteers and assistant coaches were wonderful too. The feeling of support and camaraderie the kids had was great to see. I didn’t think that my kids should do the swim meets at first (I worried they needed to do well and feared they wouldn’t) but coach Chris said they could/should do it. He said that then they would have a time to try to improve. He said it would be good for them. He was right.

Nick wasn’t always in the mood for practice but he never regretted going. This experience was good for learning discipline in general and good sportsmanship. On more than one occasion, when Nick was not interested in going, I’d said “you show up for your team.”

A post or so ago I shared a photo of Nick at a swim meet. The post title was Fibular Hemimelia Wins. I wanted to elaborate on that. I know when someone has a hardship, disease or condition, people like to say they are fighting it or that they are fighters. I may have said that about Nick but thinking about it now I don’t think it’s appropriate.

Fibular hemimelia is part of who Nick is. That will never change. Why fight it. Manage it, work with it, cope in the hard times but don’t make it the enemy. My boy will finish treatment at some point but he may have issues in the future (lots of people without limb defects end up with joint problems). I am happy that his leg with fibular hemimelia has carried him this far! He will be 10 next month!!!

I hate the reference I have seen in web groups a few times that kids who have lengthening and reconstruction are “patients” and kids who have amputations are “athletes” or “just kids” (it came up again this week). We have had some rough seasons surgery wise (last summer was hard but Nick also broke his arm in the middle of it all). I still would not say that in terms of life in general he is a patient. Nicholas doesn’t see the word patient as negative anyway and has actually enjoyed being an inpatient and requested additional days at times. I don’t think the people who have posted this realize how unkind and untrue it is. Maybe kids who have amputations don’t have as many surgeries and maybe they don’t even have fibular hemimelia anymore since they are considered amputees? Nicholas Curley will have fibular hemimelia forever but it is just one part of the amazing person that he is. I couldn’t imagine him any other way.

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