Daily Archives: June 30, 2016


I can’t believe I’ll never get to say another silly word to her, and then watch her face light up at the funny thoughts and words that come spilling out of our heads… I’ll never, ever, be able to do that again. Ever. I still can’t believe it. I can’t hold her. Rub her hand. Look down on her. Reach out and push her close to my hip and squeeze her in. Call her silly names. Refer to her in the present, or plan for her in the future, any more. She’s gone. It’s just getting harder. The pain… And reality of it all.
It was so relieving at first to watch her be pain free, and go. I was actually relieved for her, and for us. I felt guilty. So very guilty for that. She was free at last from the hell she was living, and the cancer coursing through her frail and weak body, as it caused her organs to fail one by one, from the bottom up. I didn’t have to watch her suffer anymore. We were all free. The guilt of these post death thoughts are staggering. Although, I had wondered rather quickly when I would really feel the suffering that a mother of a child gone too soon “should” feel. Well, I wonder no longer.
Now it’s just anger and pain that she was in this state of hell she suffered at all. The nightmare of the 12 months we suffered. What was stolen from us. What we fought to preserve and still were unable too. What we can’t do. Ever. 
We find little joy in our small feats and accomplishments during this time that we had with Katherine. Right now they just don’t seem enough. Nothing can make them anymore than that right now. Please understand that. It’s going to take us time to be aware of our surroundings, in any form.
She didn’t deserve this. She deserved so much more. She was amazing. To me she was so much more than amazing. Katherine was everything. Katherine was unfinished. Katherine was endless.
#KatherineTheBrave #DIPGMonster #YourNamePrecedesYou #KatherineTheLegend #Regret #NightsAreHarder #DIPG #LovesAndKisses

The “Kind” Of Child We Had

On one of Katie’s final days I had had a horrible nightmare. I came running out of my room crying, and searching for her. I ran into the dining room and I was able to see her in the living room, on the couch, still alive, and I just broke down. I was crying and sobbing, and could not contain myself. I ran to the bathroom and cried harder, and louder. I didn’t want her to hear or see me, but at some point I even forgot that she was able to. I was so beyond consoling. I could hear her though, she immediately yelled for her dad. I could hear her slurred words, as she was trying her hardest to work her struggling mouth muscles and say, “What’s wrong? Why is mom crying? Daddy? Why?” She asked him to take her to me, at some point… He carried her to the bathroom where I was a bit more calm, and he held her up to me to see that I was ok. I told her I was ok now, I had a bad dream. She was not buying it. She seemed a little relieved, but she wasn’t sure. She started to hug me, with both arms, and in her best possible effort, even though she could hardly move her arms and hands, she patted my shoulders. Little taps, with what little ability she had. Just constant little taps, up and down. Her finger tips, slowly calming me, and pushing new fresh energy into me. The sobs and sadness dissipated. She just patted and patted and whispered in a slurred speech, “It’s ok mommy. It’s going to be ok…” I cried harder, but it was less sobbing, more tears, as I calmed down. I hugged her so tight. I knew, at that very moment, that sadly this was going to be the very last time she would do this for anyone. I told David, we both agreed that this wonderful child, who loved to console others, was still able to, even in her final days, make us feel better. However, we didn’t know how we were going to survive without that feeling from her any more. And we were right… It was her last time.

In this picture Katie is consoling a classmate. She had just had a huge fight with her sister. We joked that Katherine had her fair share of sisterly struggles. I didn’t believe Katherine was going to ever leave me when this picture was taken. I had no idea as to what was coming in the future. I didn’t put stock into her ability to make others feel better, and naturally it came to her at this time. Even though I had accepted that she was diagnosed with an incurable brain cancer, I didn’t fully accept it, so things didn’t soak in to our psyches as we wished they would. How could a parent process that fully. She was in her element in this picture, and the more she was normal, and doing the things she did best, the harder it was to imagine a world without her. To imagine that a tumor, millimeters in size, could destroy such an amazing soul. I will never understand that reality. Ever…
Our child was kind, and gentle, and lived for the simple joy of those around her. She did not like to see others unhappy, or upset about anything. If she did, she wanted to heal whatever saddened you as quick as possible. She would stop what she was doing immediately, stare and evaluate the situation, then move forward with whatever she could do to ease the stress, or angst. As a child, that often meant a kind word, a piece of whatever she was enjoying, food or a toy, a hug, a pat, a suggestion of you joining her in whatever it was that she was enjoying at the time. She was like many kids out there. I wish for you all that feeling to be able to be in the moment with your littles ones. I wish for you all to be able to reflect on the little ones around you now, and recall similar traits. We forget these things, and we don’t appreciate them as we should. I’m hoping that you will, in honor of Katie.
I miss you Katherine. I’ll be seeing you. Loves and kisses.