So today was the first day I meshed Brooke into one person. Not sick Brooke and Sick Brooke. Today I pictured not sick Brooke going through last summer. It hit me that she, BROOKE, was actually that sick and suffered. The little girl in the pictures, smiling, running around, was propped up with pillows in a wheelchair, crying in pain. She was laying on me, across my lap trying to catch a few minutes of some sort of comfort. She was trying to talk to me with her eyes only, when she couldnt speak. I dont know how we got through that summer. This summer is much different then last summer. Easier in some ways, and much, much harder in others. Easier because seeing your child suffering is the most painful thing. Selfishly, I wanted Brooke to stay alive, so we could be with her. But, I knew that she should not live that way. Harder, well, because she is not here. And it gets harder everyday. Not easier. There are so many posts lately, especially, it seems, about kids suffering. The actual day to day, night to night struggle is horrific. So, this summer is different. Each day that goes by, I kind of relive the same day of last summer. Around this time last year, Brooke had really started to decline. There were so many things happening that I look back on and I literally cant believe. Every night, she would wake up multiple times. She didnt really sleep actually. A few minutes at a time. I didnt sleep either. She would be so upset, wanting a snack. The steroids, although helpful, create such problems. Well, Brooke, didnt just want a snack, she wanted a gourmet meal. And she wanted it presented nicely. Fresh fruit sliced and put on the plate just so, with chocolate chips in between them. A cracker placed here and there on the plate. It got to the point where she couldnt see that well, so she would use her hand to feel around, and if it wasnt the way she wanted, watch out! Steve was remembering this last night. He said that one night, he must have been really tired, and he put a spicy pickle on her little platter of food. Brooke freaked! Last summer, around this time, I was on the phone with Mary, Brookes Nurse Practitioner. We talked in a round about way about how long Brooke would have left. Days, Weeks, Months, probably not. I thought about Christmas. At least she will make it through Christmas. I kind of knew she wouldnt, but its not something you can think through clearly. I was on my front lawn talking to Mary, for quite some time. Asking her what would happen? How would I know? Brooke was in the playroom, with her hospice nurse, my mom and my sister. I talked to Mary for so long that day. I dont want to have these memories. This isnt what I want to remember from last summer. I want different memories. Fun memories. Happy ones. Everything is ok, because all my kids are ok memories. But they are not. And so everything is not OK, and it never will be. So, what do we do? I share this with you because we cant forget. We need to still remember Brooke, and Franky, Fiona, Bank, Bizzie, Juliana. And now, so important, we need to help those who are in that struggle and need help, and still have HOPE. Those who need comfort. Who need treatments and miracles and love.
Posted on: Tue, 15 Jul 2014 01:44:20 +0000