Monthly Archives: September 2015

“I’m the worst kid, ever…”

PLEASE READ: Katie threw up again this morning. We get frustrated because we feel it’s in her head. But that’s an old thought, that leaves us after a few seconds as we’re cleaning up and coddling her emotional state at the time. You see, she suffers so much from these “symptoms”. Much more than we do… It makes her feel worse than us. She cries, calls herself a bad kid, and repeatedly says, “I’m the worst kid, ever…” with her head in her hands. All of this, even after we tell her this isn’t true. Real tears folks, real tears. This is not my kid, this is a kid affected by a horrible disease that makes her not want to eat, struggle with a new diet, on new meds, being poked and prodded and emotionally drained, she stumbles, can’t see and hear like she used to, and she’s so tired. Tired all of the time. I feel horrible for her and it breaks my heart. I see these other kids, these other families suffering from this #DIPGMonster, #BrainCancer, #Cancer, and I see my future struggles and it breaks my heart. I shake my head sometimes and try to wipe the thought away, but I want to scream! Her type of cancer takes away her sight, hearing, movement, ability to swallow, and express emotions, yet… she will continue to feel everything and thinks the same way a 6 year old would think and feel. She will live in a black cave of nothingness with the thoughts of a 6 year old child wondering why, and scared to death. She deserves more than this. They all do. Today is the last day of #ChildhoodCancerAwarenessMonth. What are we doing, just sitting around watching our children die, my child die. We get 4% people for kids cancer, brain cancer gets 1% and Katie’s type of cancer gets even less than that! Change your profile for today. Make people ask why. Use my profile pic or just say something about this day. Make people think about our kids, about what Katie is going through, what we all will go through watching her as this progresses. Share my post. Share someone’s post. Say something about this day. Please. For #KatherineTheBraveKatie

Purpose

I loved this boy. And I never had a chance to meet him, which is usually what’s required for me to love someone. I’m harder that way. I followed his life. It was instant with him. He had an easy to love face and a story that was easy to connect to. And Katie was going through the same thing at the same time. I feel for this whole family and I dread this scenario in the future. I well up and push it back down quickly, every time the thought crosses my mind. There’s nothing you can say to this mom, any mom, me… that will help us or make it easier. And that sucks. And we cancer moms carry that guilt too. Did we do enough, or say enough thank you’s for our kid, our family, our caregivers, friends, volunteers, supporters. Were we grateful enough where it showed… Please let it show. Without guilt. It’s distracting and painful. It will still be there though. The guilt and worry. We have to keep moving and have a purpose so that we don’t stop and lose our focus and all that we’ve pushed back down, then spills out. I’ll find my purpose. I’ll have to, or else. If I hurt this bad for a boy that I’ve never met, I am definitely not prepared for a similar scenario with a child which I carried with me and cherished for nine months and loved for over 7 years. No, that would be impossible without a purpose.‪#‎MommaTheBrave‬

Johns Journey