Comfort and Joy

This photo was taken for a fibular hemimelia mom from the support group who wondered about the name ICLL, versus RIAO, versus Sinai!

It has been a long day! Nicholas saw Dr. Standard today for the leg pain he has continued to have. Dr. Standard needed to make sure all was well with the rod and it is. Nicks bone is still healing and the pain is not a sign that anything is wrong. Dr. S gave us some options for treating the pain but I think just hearing that it’s ok was enough for Nick. The relief and comfort we both felt was palpable. Thank you Dr. Standard.

You can tell Nicholas is pretty comfortable at the RIAO!
There is Nick rod looking as it should and his new bone looking just right!
And now for the JOY!

Here is Nick, Liam and Liam’s lovely sisters Paige and Tali. Liam has fibular hemimelia and his mom, Bonnie,  and I have known each other on line for several years. Today we met in person for the first time! I am always, always excited to meet FH families but today felt extra special. I really felt like I knew Bonnie already and was surprised really that we hadn’t met before. It was just joyful! No doubt about it!

Listing to Nick and Liam talk was great! Nick loves meeting other kids with fibular hemimelia and Liam felt particularly special because Nick knew he had enjoyed a video we created for kids in the support group about having feet that are different. We might share it here soon too but really it was made for kids with fh. Now we are wondering if we should use it to help raise awareness. Embracing who you are is not easy for most of us. Having a limb difference means coming to terms with who you are in a different sort of way. Nick is proud of his foot now but he has not always felt that way.

Nick’s eyes are closed but I love all the happy smiles.

Nicholas reaching out and helping kids with fibular hemimelia in a way that is more directed by him is an exciting prospect. He really directed the #jointhefeet video we created. I know we have helped others by sharing here but that has usually been directed by me. Nick will decided if he wants to lead the #jointhefeet movement or not. No pressure from me. The interesting thing is, with this lengthening winding down fh will take a back seat for him. It’s not in the forefront of his every day life all the time and I like it that way. He can feel like a “rock star” in the morning (as quoted by Dr. Standard) and be just another kid on the swim team at the end of the day. He is not defined by fibular hemimelia.

I on the other hand, in creating this blog and the support group have let fibular hemimelia be a bigger part of my daily life. Just hugging Bonnie today and seeing Nick and Liam together makes it all feel worthwhile but I have to say I would not want Nick to spend as much time thinking about fh as I do. I love supporting others and connecting. It means so much to me and I suppose if Nicholas decided to do the same some day I would be proud, however right now I love him focusing on just being him.

And he’s pretty phenomenal at that!

Here is how our day ended. Ready for backstroke at an awesome swim meet. The Arden Sharks didn’t win but it was close!

2 thoughts on “Comfort and Joy”

  1. ah, my favorite stroke. great pic of him at the block! And such great news. And it’ll be interesting to see where Nick chooses to spend his time after (such great news!) as life moves forward. because at the end of the day, he is just a kid and isn’t that the greatest! but what a help this community has been! Hurrah! Hurrah! Hurrah! Know that the fireworks this weekend are for the Curleys!


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