I need to separate the facts of what is going on with Nick’s leg from my feelings. The thing is, when you have had to do this crazy thing like decide wether your baby gets to keep his leg or not, it’s kinda hard to keep facts and feelings apart.
It’s not that I revisit the choice in any kind of literal sense (I still think we made the best possible choice and the right choice for Nicholas) but when he is in pain and I can’t fix it there is a part of me that thinks what the f*** did we do. I think moms do that about a lot of things though. Some of us blame ourselves for things in such an every day way we don’t even realize we are doing it. Regarding our specific choice, I don’t believe kids who have amputations are necessarily pain or problem free but we chose this and it’s impossible not to go back there sometimes. Thankfully it’s rare and Nick does not go there but I fear that he will some day. He just wants to play!!!!! I am like broken record with this but it’s it. It’s the thing I wanted and expected. I expected him to be able to do what he wants.
The fact that the tiny bit of mobility Nick has in his ankle is causing him pain makes me sad. We celebrated that mobility once upon a time but once upon a time I also believed that Nick’s surgeries would end in his teen years and other than not being able to run marathons, his function would be “normal”.
What I said in a previous post about another parent is true for me too. It’s not actually about the treatment choice. It’s about the reality of fibular hemimelia. The treatment choice is like a ghost that never 100% goes away. I often think it has. It feels like it has but it creeps back.
These are the moments where I feel like the reality of what is trumps any attempts at positivity. The fact is there is no quick fix for Nicholas right now. Acceptance is my only chance to make peace with my feelings. It’s Nick’s leg. I am a supporting player and I want to fix this but I can’t. Every time I think I have accepted what is, it seems there is another layer to go through or I am back at an old layer.
And then on top of worrying about my boy, I worry about fibular hemimelia families reading this and worrying about their babies. I would worry if I was reading this when Nick was a baby. Even going to the experts, things come up, everything can not be easily controlled. Emotionally (as a mom), just like physically (for Nicholas), it’s not a one and done thing. Maybe that’s a healthy reality to share. Parenting is hard. Watching your children deal with life is hard. Some parents don’t get these obvious opportunities to learn and grow over and over again!
Pray or send some good thoughts Nicks way please. He needs this pain to go away soon. Pray that I am soon writing about how silly I was to worry so much! I trust Dr. Standard’s plan. We just need to give it time.