Sometimes it’s just fun to write about nothing.
We are ten days into the new year and today T had brought me to tears with his wonderful push up on his arms and his head turned side to side, nice and high, almost like a healthy child. Even thou today was a three seizures day, after a string of days of almost no activity. It is amazing to see glimpses of future. First you hope he will do a certain skill, then you imagine how it will feel, you draw a mental image and assign an approximate date when it will happen. Today I lived the exhilarating glorious moment, but now I fear it will not come back tomorrow. Our life is now like that, not linear, we are bounced from corner to corner of the trampoline enclosure. We wanted to be the only ones enjoying this trampoline, but Life summoned the two thugs, Death and Disability and now they are jumping with us on our trampoline messing it all up. We used to do nice high jumps, even couple of fancy tricks, nowadays we just try our best not to break our bones. We no longer pretend to be in control or to be enjoying the fun. Saying you enjoy something means you must first pause and evaluate, but as soon as you do that you are no longer living in the moment. Who cares if you are enjoying yourself !? You shouldn’t, because it becomes meaningless. You live your life, you do what you love, you spend time with people you love and care about. If you are lucky you get to do it a lot. Some days I really feel like we are trying to invent shit just to mask our misery. Life is not that complicated, you wake up, drink, eat, go to the loo, go back to bed. Rinse and repeat, everything else over this basic stuff is a luxury you should appreciate, but you don’t because you feel entitled to have what others have. But you selectively only see the ones that have, not the ones that don’t.
I like my life, my son’s disability gave me a purpose I have lost when Sara died. It’s not only “just” raising him, but it’s literally teaching him everything. Including teaching him to see. It has been the steepest learning curve of my life, my brain is not ok anymore after all that mental trauma, but maybe reducing my brain to basic functions will help me to survive this excruciating, numbing repetition of exercises he needs to do on a daily basis.
The darkest clouds always need to move first in order to reveal the silver lining.
I can see mine and I’m thankful for that. But I do not thank imaginary God, I thank myself for the tenacity, stubbornness and general inability to just “GIF UP”
We don’t do that in this house, because this is Sara’s house.
ktojoy 