On March 23rd the first Fibular Hemimelia Potluck was held at Hackerman Patz house in Baltimore. On of the moms from our Facebook group planned it and several families came. There was even mom with a new little baby with fh! We also enjoyed the company of some of the families who were staying at the house. Having so many kids with differences together kid of made it so that no one was different at all, if that makes sense. Of course we also had siblings of kids with limb differences and they fit in just fine too!
My favorite moment was when Nicholas and another little girl pulled out their legs to compare. It felt so great for me to see these legs, different from each other but also so similar. Most people are surprised by the sight of Nick’s leg. But not this crowd!
Sitting around a table chatting with parents who absolutely understand what you have been through is awesome! I think there were 6 fibular hemimelia families altogether. In addition to the newborn there were two little ones, one in an external fixator and one having just had his taken off. Then there were the kids who had had a fixator or a few!
I loved meeting families in person that I had known on line for a while. Some folks we had met a few times already and it is always a joy to see them and their children too. One family we had met at the RIAO and saw at Sinai when Nick had his last surgery and their son had his fixator put on. Now this sweet little guy was in a cast. Thats another rough adjustment in many ways but seeing him and his parents post fixator was great. It is a long road in so many ways but it’s special to see families on the journey you have been on. To see them at all stages of treatment offering each other encouragement or just the listening ear of someone who has been there was amazing. It is something we will be doing again for sure.