Nick began 2nd grade last week. We got him a simpler brace to wear to school thinking both recess and gym probably warrant some extra protection. For a boy without much interest in organized sports he does play hard! Kick ball was big last year and he obviously kicks with his right leg. Thank goodness he had surgery early in summer. He is currently free of limitations.
On the way home from school today he said “Everyone knows me because of my leg. I don’t hide that one leg is smaller than the other. It makes me famous. I am the only kid in my school with Fibular Hemimelia”. Charlotte then told him that he might not be and that there was a kid with a cast on her arm. Nick’s response was something like ‘seriously, that’s not the same at all’. It was a fun conversation mostly between them but of course it made me smile. I do worry though that at some point someone will tell him that he is not famous. We’ll have to deal with that if it happens. For now he’s willing to sign autographs anytime after school… Just kidding!
On a serious note, while we have had some fabulous family support in the fundraising department, we’ve not had much success otherwise. Giving shirts away for donations has not helped. I’ve got a lot if t-shirts! Nick is so into fundraising this year. He understands that some kids don’t have the option of keeping their leg because they dint have insurance or enough money. It probably helps that I took the kids to a rally against needless health insurance cost increases for low income and special needs folks! Nicholas held up a sign about how families need affordable health care. Maybe I wrote about this already but I am so proud that we were there. We were maybe 1/2 the rally but that’s not important. It taught the kids that we need to stand up for others and that we can make a difference.
So please consider donating to the No Fibula No Problem team! I’ll be posting a link. Please share it! Donations don’t have to be big!! Show your support for Nick and all kids with limb differences. It is not easy to be different. Nick has his down moments but they are just moments because he has received such great care at Sinai because we have insurance that covers his surgeries. He gets what he needs physically. We’re better able to support him because we don’t have looming hospital bills!
I am so proud of Nicholas! So lucky to be his mom! My life is beautiful because of him and my soul is stronger because of what we have gone through together. Fibula Hemimelia is his journey but I’m doing my best to be beside him and make sure he has what he needs and has the best chance to live his life how he chooses. I wish all those with limb differences had options! Even if amputation is the best road to take, kids still need access to experienced doctors. Parents need to be able to explore options so they know they’ve made the best informed choice for their child. Donating to save a limb will help that happen and so much more! It’s been a hard year for many but please consider sharing the link and giving a little. Skip the morning latte and save a limb instead!