I try to be nonjudgemental, not a know-it-all and not pushy, but sometimes I feel like I fail at some or all of that. When I hear about children with ankle and/or knee issues that have had lengthening but never had their joints addressed, I get upset (any doctor doing lengthening for fh today should know enough to take care of the joints as well. I know not every kid will need the surgeries Nick did but most will need some!). When I see things in photos that are so clearly wrong, I get upset. When I read about doctors telling parents that lengthening is ruled out because of total expected discrepancy or number of toes I get upset.
Yes I have a been there done that attitude sometimes but that’s because, as a parent, I have. I have been on countless web chats with the RIAO docs and had countless conversations about fh and read everything I can about fh and tried my best to support others the best way I can. But like I said sometimes I get upset.
When I get upset I type fast. I make a lot of typos (actually I am typo filled even when I am not upset… it’s the tiny iphone screen I swear!) and I sometimes sound like a pushy judgmental know-it-all. That is not what I want to be and I believe it does not serve parents at all.
The truth is there are parents who will and do choose to amputate a leg/foot just like Nicks. Even though lengthening and reconstruction are possible. It’s their choice and there’s no right or wrong. I also cant view their choice as a judgement of my choice.
It is upsetting however when the choice is made with inaccurate or outdated information.
The group and this blog are intended to be resources for parents and outlets for me (the blog) and all FH parents (the Facebook group).
I received an email this week from a new fh parent. One comment made was that my blog posts make it seem like Nick’s life has been chock full of doctors appointments and surgeries. The thing is, I post to the blog primarily when Nick has doctors appointments and surgeries. I don’t post much when things are just “normal” unless there is something on my mind or something going on in the group or just a limb related bit of news I want to share.
If you look at the time frame of posts you can see, I think, that Nick’s life is lived in between surgeries for massive amounts of time. Even during surgeries he played and lived and laughed! I post about the hard stuff usually. I probably do it to help myself make sense of it and so others who have been there or will be there will not feel alone.
This week I sent an apology email to a parent from the Facebook group. I made a comment that was more general than anything but it was in the comments of her post. She has a child who loves athletics and is having a hard time. I went on a rant about how athletics aren’t everything, every kid wont be Oscar Pistorius even if they have an amputation… blah… blah… blah! She never said she wanted to amputate her kids foot to make him a better athlete. My comment was pushy, know-it-all, and judgmental sounding. It wasn’t my intention but it was how it was received and that’s on me.
So I take a deep breath and a step back. I remind myself that it’s about support and caring and not doing what I think is best! I do not know it all. However if I do know more about fibular hemimelia than your child’s doctor you need to find a new doctor. I don’t know the difference between the calcaneus and the talus but the way I see it I don’t have to because Dr. Standard does. He’s got that part covered and actually knows it all.