It’s hard to look back and fully comprehend how different life is from a year ago. Last year Kai was here. Kai played. He smiled and snuggled. We were settling in to this crazy world of pediatric cancer. We were staying the course and sticking to his chemo. He was stable.
A year ago we were fighting. We still had some sense of hope….
In so many obvious ways this has been the most difficult and trying year of my life. 2012 will always be the year my baby died. I want so badly to say I am glad for this awful year to end, but this was also the year where Kai did most of his living, so it is hard to see it go.
I will admit, when I first think back, I think of 2012 as the year of slowly watching him slip away. Such a delicate decline that sometimes I didn’t even notice from one week to the next. Every day our reality became something new. We adapted and moved on because we had to but as Kai’s personality, abilities and strength faded from one day to the next, so did our hope.
Hope is a funny thing. At times I have felt guilty for not being hopeful enough. At other times I have resented the whole premise of hope- as it seemed to me, nothing more than a failed attempt at tricking myself into a life I was not living.
It was a dark year at times and as much as I wish to believe the promised hope and rejuvenation the new years tends to promise, I am sometimes afraid the darkest days have yet to come.
For all of the heartache and disappointment I am still not ready for 2012 to end. I actually wish I could relive it forever. Spend everyday with Kai, solely focused on him. I got to know him this year and he helped me get to know myself. We lived a lot. We had the opportunity to do some wonderful things and meet some amazing people and ALL of these experience with Kai, the good the bad and the ugly, have changed my life forever. As devastating as the last few months have been it is hard to imagine a better year ahead. A better year without Kai just doesn’t seem possible.
I feel like I have lived most of my life in fast forward, thriving on the possibility of what’s next. So excited for the future that it is sometimes hard to enjoy the moment. That part of me seems so far away now.
Having a child with a brain tumor changes that. Living with Kai changed that. For the past two years I was incapable of thinking of the future. I made no plans or commitments other than to be with him. It was an adjustment to live this way, and at times it made me feel very lost and alone. At other times it was liberating. We did what we wanted, whatever Kai was up for that moment. And that was enough.
Now that Kai is gone, the future is hard in a whole new way. It is hard to thrive. It is hard to be excited or to put hope into the possibility of something better ahead. At the same time I am incapable of living in the past…it just hurts to much.
But maybe this is how it’s supposed to be. Maybe today is enough. Maybe in the joys and heartache of 2012 Kai has taught me the true lesson I have been fighting against my entire life. Because of Kai (today, at least) I can truly live in the present.
I really have no other choice; it is the only way I can survive.
So instead of recapping the last year or looking ahead to the next I will say this; Today, right now, I miss him. I feel lonely and lost, inspired and invigorated all at the same time. . I am savoring the past year we spent living side by side, I am open to the future and I am also perfectly content just feeling today for today.
I really have no other choice; it is the only way I can survive…