Acceptance. Denial. Grief. Fantasy. Refusal. Disappointment. Disbelief. Dreams. Sadness. Confusion. Artifice....
.... A new life. Losing a child, even when you know it's going to happen, creates a life that you don't always understand and don't want to. You experience emotions that you see second hand on TV but never thought you'd go through.
I spent a year caring for Bea through her illness. The postings from those days were mostly cheery and positive, which is just how I am. They don't mean that I wasn't scared or sad or exhausted. Bea's life for the 12 months that she battled cancer was filled with an immense amount of activity. She was in the hospital for 4 weeks and then had radiation 4-5 days per week for another month at 7am. She had physical therapy a few times a week, saw her doctor at least once a month and travelled to Pittsburg for the trial she was in every 3 weeks. She finished kindergarden, took hip hop dance lessons, went to summer camp and took piano lessons. She became a selling artist and had an art show in the fall (during our neighborhood garage sale but still it was cool). She had loads of play dates. Her little bro was in the mix for most of these activities.
When her health started to decline I did everything I could to take the attention off of this and give her amazingly fun things to do. During the fall we went bowling every Sunday afternoon. Even when she couldn't walk she could still push the ball down the little slide the alley has for children. And she liked the snacks.
But she did decline and it all seemed to happen so fast that I didn't have time to process it. Or maybe I didn't want to. Because there was nothing I could do to fix it. I could only take care of her and that just doesn't seem like enough. I owed her more. More time. More love. More life.
I don't feel guilty that I couldn't find a cure but I feel just so damn sad that this disease even exists. I don't want any family to go through what we did. I don't want any more children to give up their future because some cells in their brain decided to do their own thing.
I'm not ready yet but when I am finding a cure for pediatric brain cancer will be a big focus in my life. I don't know how I'll do it but it's coming.