You didn’t tell your child she way dying? Isn’t that sort of selfish?”
I remember the day I came to the realization that Katherine was going to die. They said she would. You read the statistics, she would. But you never truly believe it until they refuse to fight for her anymore. Until they look you square in the eye, with pity, and tell you that you need to stop for her sake. It hit me unlike anything I’ve ever felt. I walked out of that doctors office, Katie in tow, holding her hand, trying to get her and I as far away from that place as possible. She was trying so very hard to keep up. I did not realize that I was walking so fast. Staring forward in complete and utter agony and defeat. Holding back the tears, thinking… How am I going to tell this 7 year old that she is going to die? That she is going to leave this earth before me, and her daddy, and sisters. That this isn’t going to happen smoothly. She will suffer and cry. We will be there, crying too, but there will be nothing that we can do. The two people, mommy and daddy, who are supposed to protect her will not be able to.
I drove and decided I was going to do something that I swore I was going to do from day one. I remember receiving this diagnosis and insisting to my husband, family and friends that I would never be selfish enough to let my child die and not tell her. Age matters not! She should know. It’s a human right! So months passed, and we fought, and we lost… and here we were. Defeated. DIPG won. Time to buck up and keep my promise. Right? So I went to a therapist. They would surely be able to help me say the right words. After two, I realized that they had none. Then I called her oncologist and she begrudgingly sent her to a therapist. One specialized in children with cancer. She would surely be able to evaluate her and give me some insight into how to tell my child this awful news. They would get to know her and give me all of the answers I needed. Or maybe even some direction. But they could not.
Their advice… you will know. Or you won’t. There is no right answer. Ya, we know. We’ve dealt with that a lot lately. No one seems to have answers for us. Not old medicine. Not western medicine. Not even mommy and daddy. 
Time went on, and we slowly realized that they were right, those therapists. We would know. Which is why it never came up. Because Katherine already knew. I could tell. I could see it in her face and hear hear it in her voice. She was dying, and she felt it. She cried a lot, just tears to herself. She talked a lot about God and heaven, suddenly, with no encouragement from us. She knew, and that may possibly be why this was so much harder for us all equally. She didn’t speak of it, because she was struggling with the same question we were. How to talk about it. How to not hurt us. Her slow death was an unspoken actual truth, in a world full of harsh realities that seemed like an awful dream. The stuff of nightmares, come to life. In our home. To our family.
Not telling our child ended up being harder then telling her. There is no human right when it comes to pediatric cancer. There is no answer that will correct the bad, to soften the good. There is only her. What was best for her. And what was best for my daughter was to leave it unspoken, but know it was still there. My experienced advice to other #DIPG parents is, “You will know… Or you won’t. And that’s ok”
I’m so sorry sweet baby. I miss you terribly and if I had another chance but had to endure this suffering, I’d do it all over again, every year for the rest of my life. Just to see your face, and hug you one more time. Love you Mongrel. – Mommy
#katherinethebrave #dipg #lovesandkisses #seeyounexttime #rainbowsocks #rainbowsherbet

Leave a Reply

Your email address will not be published.