Why do we compare?
To measure, to evaluate, to feel better? Yet when we do we mostly end up feeling not so great about our measuring up.
I find my self no longer comparing Mr T to other healthy children, instead I compare if he is better off than the numerous children I come across on my journey through social media. Mostly I come out of this exercise feeling pretty down.
We had some positive things, but the losses were so much greater.
T can no longer eat with his mouth, I find this fact just heartbreaking.
Because of his infection, hospitalization, and his surgery he lost any tiny improvements to his movement. He is yet again a limp doll.
We are fighting with bureaucracy to be able to get medication that might help him. At this point his epilepsy is classified as refractory meaning no drugs seem to help.
I’m trying to research as much as I can and basically show up for our neurology appointment with a laundry list of drugs to try. Our doctor is amazing and supportive, which makes this whole thing at least a bit bearable.
I no longer believe in miracles. I’m scared to hope for something better, because I can no longer handle the disappointment. Two and half years of hell has left its mark.
Days are filled with therapy, phone calls, emails just to find myself alone with my dark thoughts of torturous future. 15 months of no milestones slowly ate away any hopes for Mr T ever walking.
I try not to think this far, I avoid getting emotionally involved in these thoughts. But it’s the last three months of the year and the inevitable evaluation comes, no matter if I want or not.
It will be our third Christmas without Sara. Every Christmas I hope for better ones next year only to find myself facing even worse ones. I know that it’s not about gifts, but when you have nothing to give to your child because he can’t play with anything it really hurts. I used to love the holidays, I hate them now. I manage to participate in the festivities, I love baking, but then Christmas Eve comes. We stare at each other at the dinner table, trying hard not to cry as not to upset each other. It hurts so much, but words are not enough to express the pain, anger, the longing for something we will never have.
I’m truly happy for my friends and their happy Facebook posts, but sometimes in a weak moment I slip… and compare.
ktojoy 