As a mom of a child with fibular hemimelia I have had to do some hard things. I have left my son in surgery 15 times. I have watched as physical therapists make him walk post op and listened while be begged me to make them stop. I held him as he screamed in pain when a nurse denied him pain medicine. I have taken off bandages as he screamed. I have rubbed pin sites which are essentially like open wounds with wires sticking out as he begged me to stop. I have raged at the fact that he still has pain despite all we have done. ALL HE HAS DONE! My son is brave and positive and so fucking strong!!!! (The f-bomb is my word of the month I think so please if you mind it try not to).
So what is my point in sharing all that… My point is I have dealt with all of that and pushed on and pressed through. Getting through that made it seem so hard to believe that what could bowl me over in pain was a trip to the shoe store.
Other parents in our support group have expressed the same. Something about not being able to get your kid shoes or having to tell them they can’t have what they want because we can’t put a lift on it or get an AFO in it. There is something about having them not even able to wear shoes.
When Nick was a baby I put him in a ton of “feetie outifits” or rompers or whatever you call them because socks and shoes were both impossible to keep on.
Finally around age one we had to get him shoes so that he could walk outside. You just can’t walk outside in socks or feeties forever. Nick’s Curley Grandma and Grandpa financed this first pair. I am sure lots of grandparents gift children their first pair of shoes but this was more significant and sweet and also so like them to just step up and help and give.
Believe it or not getting these shoes was a triumph but also a tearful experience. Nick had to have a mould of his leg done. Holding babies still for any reason is akin to torture. So we both cried I am sure and at this first shoe appointment we met a FH family! How crazy is that!
This however was not the first or last time tears were shed over shoes. Nick’s never cried about shoes since but I have. I believe it’s sometimes the regular every day things that get to us. I can turn into mama bear and fight for my son and be strong through his pain but for goodness sake getting shoes used to bowl me over.
Shoes are an every day reminder. The ability to wear shoes and choose shoes is something that is so taken for granted. Because of this I have not really been into shoes for any of my kids. Usually they only have at most 2 pairs because Nick only ever has one.
I will say the shoe situation has been much improved for Nick and he wears a brace that allows him to wear two that are the same size. I let him buy $150 Jordan’s to make up for all the years he had no choice. He does not know thats why I do this. This drama is entirely mine.
So to the parents who are struggling with this, you are not alone. I know some kids are upset about shoes and I know it’s easier generally to be a boy in this situation. I don’t have all the answers on this but I can tell you that feeling bad for feeling bad sucks and doesn’t help. So many of us have been there. We buck up for the tough moments we expect but no one expects shoes to hit ones heart so hard.
Maybe shoes are just a metaphor for what we expected for our kids. It’s ok also say fibular hemimelia sucks at times! I have felt that many times. 99% of the time I wouldn’t change my boy for anything but the 1% when I want to is because I do not want him to suffer! I don’t want him to suffer little things or big things and sometimes shoes or lack of is an in our faces reminder that we don’t have control over that. No parent does but as I have written in the past fibular hemimelia give us some of the biggest parenting lessons much earlier than most.
Still it gets better! Here is Nick’s most recent pair. I don’t know that he will have as many options once he gets an ExoSym but I am not going to stress that now. All the beautiful shoes in the world are meaningless while he still has pain. He so loves these sneakers though!