There is no good leg.

Elizabeth Gilbert recently said or wrote (I can’t remember which since I try to absorb everything she puts out in the world) that she is trying to stop being judgmental… to give up righteous indignation (not a direct quote in any way but it’s the jist).

I’ve been trying to do the same. But I am failing and this post is proof.

There is a procedure called an epiphysiodesis which basically is used to stop the growth of the longer leg in kids who have fibular hemimelia (it’s also used for other conditions). From what I learned at RIAO ages ago it’s safe, reliable and a great option to have. The International Center for Limb Lengthening describes it as a “small, minimally invasive, uncomplicated procedure”. It’s outpatient and for some kids it can eliminate an entire many months long lengthening.

In Nick’s case, so far, he is still refusing it. He wants to be whatever height he is meant to be. We want to honor the choices he makes about his body.

If it were me, I’d be all over this option. I would not hesitate. Not for a second. If Nick were willing, I wonder if it would have happened already. The timing of the procedure is very important. You can use the multiplier app to figure it out.

The thing that upsets me is that some parents wont consider if for their child because they “don’t want to mess with the good leg”. Calling the longer leg, without fh, “the good leg” in and of itself feels wrong to me. For one leg to be good by default it means the other is bad. I can imagine how Nicholas might feel if we had referred to one leg as good. His leg with fibular hemimelia has been through a lot, I’d argue it has worked harder than his leg without fibular hemimelia ever will. That’s a good leg in my mind.

Like anyone else’s legs, I think the simplest way to label the legs of kids who have fibular hemimelia is “right” or “left”.

And the aversion to doing a surgery on one leg in order to eliminate multiple surgeries on the other is poor logic, in my opinion.  Although I do understand the fear that drives such a belief. It’s also really not my business what choices anyone else makes for their child. I just happen to read a whole lot about it in the support group and sometimes share my views if opinions are requested.

Maybe the labels good and bad seem pretty benign to you. Maybe I overthink these things… I don’t know. I’ve seen other things this week which I judged pretty harshly. Such as a parent sharing a photo of a baby in a fixator calling it the “ugly truth” of fibular hemimelia treatment. It seems to me that this parent is trying to illustrate that fh treatment will not be an easy road. However I think the choice of words is frankly ugly and inaccurate. My sons leg grew 17 centimeters with the help of three taylor spacial frames. There is nothing ugly about that. It wasn’t always an easy journey but it needs no dramatizing and the last thing I would ever call it is ugly. Some of his fixator pics are so darn cute!

Nicholas' baby fixator (taylor spacial frame about a month after surgery March 2005
Nicholas’ baby fixator (taylor spacial frame about a month after surgery March 2005

I have been keenly aware from the start of this process that as his mom, Nick wold take his cue from me at the start (we reverse places pretty often on that one these days). Nick does not feel like a victim of fibular hemimelia. Yes we are still figuring out his foot pain but he’s living his life just fine in the mean time. He had some foot pain on Sunday after a lot of activity but both feet hurt… mine did too. There are no good feet or bad feet.

We’re pretty lucky to have feet. Whether two toed, or five, braced or free, carbon fiber or flesh… we are fortunate. Don’t judge a foot by it’s fixator…  or a leg by it’s scars… or a parent for their fear… or a mom for her judgy post on judgment… try not to. I’ll keep trying too. It doesn’t get any more good than that.

 

8 plate summer update

I cant believe it has been so long since I have posted but life has been busy here. Baby number 4 is keeping me busy! Nicholas has been doing great! In fact tonight he is at a baseball clinic learning how to play with former pro athletes and having a great time! This summer he has started jumping off the diving board at our local pool and going down the water slide and loving every second of it. All we have to do is get to Hershey Park and go on our Glen Brook vacation and summer will be complete!

We also got great news yesterday in Baltimore! Dr. Standard said that Nick’s super knee surgery can wait another year or so and as you can see from the xrays his 8 plate is doing it’s job quite well!  When Dr. S asked him how his foot and ankle were feeling Nicholas said “great, fantastic”.  I cant think of anything better to write than that!