Recently a neighbor complimented Nick on his running. Nick was a bit confused but managed a polite reply and kept going. He totally takes it for granted that he can run.
I am grateful for this fact, that he expects his leg to work just fine for him, because it does. I totally understand others being surprised by this. I pointed out that Nicks gait is actually more “normal” running than walking. It’s not what people expect. I also shared the fact that he takes his ability to run for granted and that that is the best possible outcome. I wish all my fibular hemimelia conversations went like this.
Being one of the moderators of Fibular Hemimelia and Limb Lengthening Awareness, the support group I created, was a challenge for me in the last week or so. Someone posted about a 10 year old choosing to have his leg amputated because he didn’t want any more surgery, after having had 9 surgeries to keep his leg already. Of course a declaration like this is not the usual post in our group and it started a discussion that maybe never should have happened.
I got hung up on the details, the amount of expected difference suddenly increased, he would need four more lengthenings, the doc said his ankle could not be fixed. I am not sure how it can be called the child’s choice with those realities in front of him. That sounds impossible to me. But those realities didn’t add up
in my mind and I expressed concern over the child’s ability to know wether he was or was not making an informed choice. I suggested they research the foot on foot AFO’s that seem to be a great way to delay lengthening or delay the whole choice.
The fact that the facts didn’t add up to me really didn’t matter. Every now and again I get too caught up in something in the group. I started the group so families would know that lengtheng was not torture and that it works! I wanted accurate information out there to replace scare tactics I read on other groups.
Reading about a 10 year old making this choice was heartbreaking. I felt like his doctor copped out by giving vague information, making it sound impossible and then telling the child to choose.
The problem is that this is how the situation read to me based on his mothers posts. I didn’t have all details. Even if I did the truth is some people choose amputation even when it’s not the only option. I don’t think it’s wrong. I just think that in our group we need as much factual information as possible. Parents use what they read in the group to make choices for their kids. Hearing that at age 10 an expected discrepancy can jump 10cm if frightening. Parents needed to know that that is not typical.
In the end I let my quest for clarity cloud my capacity for compassion. This mom just came to the group for encouragement. She didn’t come to be questioned. I could have tried to understand that. I was just too far gone. My suggesting she check out the Amputation Awareness group came too late. Honesty though I am not sure why she chose our group. It wouldn’t take much reading to learn our leanings. Our group name states as much and our description is even more clear.
I guess I took it for granted that people understood this. When the amputation awareness group was first created I thought it was silly to call it “FH and Amputation Awareness”. I likened it to calling a group Cancer and Chemo Awareness, because amputation is the standard treatment for fibular hemimelia.
Ultimately though I was grateful to be able to suggest a group where this mother could be understood. Some members of the lengthening group understood her from the start. Sadly I was not one of them.
In the future I think I need to keep kindness on my radar more often when posting. I took it for granted that I would be compassionate because I know I can but that doesn’t mean I always am.