Someone once said to me that they thought it was great that I treated Nicholas “the same”. I can’t remember what I said for sure but I remember thinking, ‘how else should I treat him’. From the day he was born I felt, with certainty, that everyone would take their cue from me, so I needed to set the tone.
But it’s not that simple. It hit me on Sunday when our minister, Barry Stopfel, was doing a sermon that largely was about differences (It was about more than differences but this is what I took from it on Sunday). Our differences, whatever they may be shape our lives. Our experience effects our perspective and how we see the world. Do we spend so much time worrying about seeing everyone as the same, that we miss who they are in the process. Fibular hemimelia is a part of my boy, maybe hard to miss while he is in his fixator or in shoes and long pants but it is still there because it has changed his life inextricably.
I have tried so hard not to make fibular hemimelia who he is. Nicholas only leaned the actual words a few months ago and I think I should have told him sooner. It almost seemed like things made more sense to him when he had a words for it. In the past when he asked why his leg and foot were different, I would say ” because that is how you were made in my belly”, or “that is how god made you in my belly”. I was so worried about him being defined by his difference without realizing that maybe he has been refined by it.
Fibular hemimelia certainly shaped me as a parent, from day one. First off I was grateful that his health was excellent because once one thing goes wrong, you begin to realize anything can go wrong and it is easier to be grateful for what you have. Secondly, I wanted to make sure to give him the best and strongest foundation of love at home, hoping he would then be better able to handle whatever happened when he was out in the world. I was sure that if we accepted him, just as he was, then he would accept himself too. And I believe he does. Nicholas does not hide his leg. He will gladly tell anyone about it. Fixator and all he is comfortable with himself.
Nicholas thinks we are all original in some way. According to him, I am original because I have a five head instead of a forehead (or because I am child size by his estimation). Wayne at church is original because he has a one hundred head (picture a handsome man who also happens to not have so much hair). Steven is original because he is lacking in the booty department, and so on. Is it the same as having fibular hemimelia? Not really, but to a six year old life is so much simpler (Nicholas asked on the fourth of July while talking about patriotism “why cant we just love everyone in the whole world”).
Simple? It should be. Accepting someone does not mean looking past or forgetting parts of them, which do make up who they are. It isn’t treating them the same as everyone else. Why do we need to be the same or be treated the same? None of us are the same.
I am so proud of my son for his strength and courage. Is he the same as all the other six year old boys? No. He has been through things most children could not imagine. He has compassion and courage beyond many adults I know. That is a part of who he is. Maybe it’s not because of fibular hemimelia and maybe it is. Who’s to say?
I am teaching Nicholas what I believe to be the same about everyone, although he has likely grasped the concept already, that we are all the same in worth and dignity and you can love everyone, even if it’s not the same kind of love, without ever having to forget or look past any part of who they are. Whether it be a smaller leg, a larger forehead or a booty-less back side.