This morning someone suggested I take Nicholas to Shriners when discussing the Exo Sym which we are trying to get for him. This was someone I respect and trust. Of course I gave my speech about researching Shriners when Nicholas was a baby and believing they have an orientation toward amputation. I mean I have research (research… my holy grail) to back up my assertion. My companion told me they had done the exact opposite for someone she knew, they really didn’t advocate for removing anything at all and her friend received excellent care. This was not about fibular hemimelia but that does not matter.
This reminded me of how much I have learned through being the mother of a child with a limb difference. Some of what I learned I didn’t necessarily want to learn and todays lesson was one of those…
I have learned about my own tendency to be rigid and judgmental at times. I have learned how much I take pleasure in being right. I know this does not make me a uniquely flawed human being, however I have also learned how to open my heart in these humbling moments and realize that I should not add judging myself to the list of judgments.
When doctors told us there was no right or wrong choice when we were deciding how to treat Nick’s fibular hemimelia I didn’t really believe them. I was determined to make the right choice and keep it right, make it right.
I didn’t realize that either really could have been right. I would have worked to make things right no matter what we chose, but that didn’t mean it was “right” in the larger sense. I was such an advocate for limb lengthening I made people feel bad about their choices or at least I was told that. I had parents write to me privately to share with me that they felt bad not choosing one of the expert docs I so vigorously recommended in our support group and everywhere else. I also made Nick feel like being “save a limb people” meant amputation was wrong. Talk about regrets!
And yet in spite of these regrets I don’t regret our path or the actual choices. I can take the lesson about rigidity and judgment and try to be aware when it’s happening again. I don’t know if there are any right or wrong choices anymore. I know many children who have been helped by Shriners. I know many parents who made the hard choice of amputation for their children. Their kids are happy and active now. That seems so right to me. My son is happy but I can’t say he’s active right now. We are working on changing that. We will make that right.
There is nothing more right than having options. Limb or no limb there is nothing more right than kids being as active as they can and want to be. It now seems to me to be less about how to you choose to get there so long as you get there. Not to discount the journey itself because the journey, the path, is where the lessons are after all. I am so grateful for the lessons on mine.