That’s about as true as quotes get, at least to me. It was posted on Facebook by another Super Mom. Super Moms are moms of kids with Fibular hemimelia who have gone through the super surgeries (super hip, super knee, super ankle and yes these are technical names for surgeries and the Super Mom moniker came from the Super Doc himself: Dr. Standard). There are so many families of children with limb differences who inspire me. We’re a unique group. We have tough choices to make. Choices most parents couldn’t dream of making. If you asked me when I was pregnant if I could imagine having to choose between amputation and complicated limb reconstruction surgeries I wouldnt have been able to fathom it and yet…I did. Many parents do.
We made the choice over eight years ago to preserve Nick’s limb. Even if it would not function as well as a prosthesis in his case. I wasn’t really worried about Nick being an athlete. We felt it would be wrong to amputate a functional foot. I still feel that way but I am now questioning how functional Nick’s foot will be. For the first time since making the choice we are questioning it. More specifically Steven and I are worried about Nick’s ankle. Steven’s point is “If eight years old and eighty something pounds is too much for his ankle, how will it handle carrying 200 plus pounds into adulthood?”
When I go on web chats and chat on Facebook and even return messages from readers worried about their children’s future with FH it has never been difficult for me to be supportive and positive. I don’t doubt or regret any of the advice I have given or what I have shared. But the fact is that almost or maybe every time we’re talking about cases much less sever than Nick. Maybe with the exception of bilateral Fibular Hemimelia but that’s very different in my opinion. I wish there was a mother I could contact, who has a child with FH as sever or more so that Nick so she could tell me it will all be ok… his foot will function well even though he’ll be a great big guy… he won’t be in constant pain. I suppose Nicholas having pain not related to surgery, that is interfering with his daily life for the first time ever is really throwing us. Maybe we’ve been naive? Probably so.
I need to know that Nicholas’s ankle will last. At least long enough for there to be some advancements in medicine so he could have other options. I need to know that this next reconstruction will work. I want so much for Nicholas to be able to go longer between surgeries! This is simply not a process that is compatible with doubt. I need my faith back.
Steven and I as parents have to be strong enough to ask all of this of Dr. Standard and trust that together we can make sure Nicholas has the best possible outcome. Maybe we have to be strong enough to face the fact that for Nick there are no easy answers, no perfect solutions. Nicholas was not born with mild Fibular Hemimelia, or even moderate Fibular Hemimelia, his case is pretty sever. The outcome we need is a functional foot with a stable ankle that can handle the big guy physique Nick’s already growing into.
It’s time to make a decision we made once and have to be strong enough to make again. It’s the only choice we have.