Nicholas asked me this week “What would people think if Nicholas Curley lost his foot?”
This is, in my opinion, one of the best questions Nick has asked me. I had worried that this blog and the group and my advocacy in general would make him want to keep his foot because of what he feared I thought or felt. I had not realized, that like me, he would feel the weight of a world on his shoulders at times. This fibular hemimelia and limb lengthening awareness world. When I first heard the word symes, I was scared to share about all this because I worried how others would react. Would they question the paths they chose for their children because Nick’s has potentially taken this unexpected turn? This is not the first time I had worried about the influence this blog or I have had. But now I worried about others worry and I did not want Nicholas to.
Nick added that he wouldn’t make a choice based on that but he wondered. To which I replied that people would just keep learning from his journey. He would be able to share a whole new side and others could learn from him, same as always.
Nicholas during this conversation also said that keeping his foot is his goal. I let him know that that is ok and we will work toward his goal but that his dad and I really just want him to be able to move freely. To have a body that works for him. If that can’t happen with his foot we would want him to consider his options as openly as possible. I love his foot! I would never want him to loose his foot if it’s working. I just don’t want him to value his foot over his ability to live his life how he wants to.
See even though the insert has worked, we’re still talking this out and thinking it through. The other thing I want to share is that the weight of the fibular hemimelia world was never actually on my shoulders. I let Nick know it’s not on his either. Once I opened up in our support group I did not feel a weight holding me down, I felt lifted. Truly. Lifted and held.
In the past I have had many parents let me know that this blog helped them choose a treatment for their child and for a few that choice was amputation. There are probably others that did not feel the need to write to me and let me know that. At first this upset me since I started all this to bring awareness to lengthening because amputation was and is still the standard treatment, sometimes it seems without much regard to the severity of the deformity, along the way though I realized that if reading about this journey made them more sure they didn’t want it, that is a good thing. My ultimate goal is for parents to know the options. The options may change over time. The options now included foot on foot prosthetics which are an awesome choice for anyone who is not sure what to do.
Seeing Nick’s leg work for him, before anything was done to it, was such a joy. He walked independently for the first time at 15 months old. Of course we wanted to keep his leg! It was functioning already. How could I possibly listen to anyone who would say his leg would not be functional. The truth is I didn’t listen to anyone who would say that. We chose not to go beyond two opinions because we knew what they would say. Nicholas and I talked about that too. He hadn’t realized that most, maybe all other docs would have said amputate. I guess in a way the odds were not in his foots favor, however that fact, solidifies even more my belief that his foot has been a success already! Right now the insert working feels like a miracle but if it stops and the time for choices comes I wont ever stop feeling grateful that his foot has come this far and carried him this long!
Lastly I want to thank everyone who has been sending prayers, good thoughts positive energy to Nicholas. I especially want to thank all the parents who have reached out to me and shared how knowing Nick’s journey though this blog has helped them. I finally fully realize that this blog is not about being a leg lengthening advocate, I still am, though I feel like I lean toward being an options and education advocate more than anything now.
The subtitle I chose when I created this blog still holds true, Fibular Hemimelia: A journey through diagnosis, decisions, limb lengthening, reconstruction and just loving my boy! This blog is about sharing a journey, sharing hope and connecting. My heart feels so full from the weight of the love I feel from so many of you. Thank you!