Sorry for the delay, friends. I’ve been a little, well, preoccupied. Last week was full of emotional moments for me: watching my son have poison pumped into him, celebrating when it didn’t make him sick, wondering if it was working since it didn’t make him sick, and trying to keep my mind from completely stopping all together. It wants to. I just can’t let it.
I wanted to leave this “world” behind. I really did. I thought we were in the clear. As Ben would say, we beat that level of the game. It’s not that I was ignoring the fact that lots of kids are still getting cancer – and dying from cancer – but I thought we were done. It was my understanding that our main issue would be that Ben hasn’t been growing – and we were working on that with an endocrinologist. But here we are again. Chemo. Shots. Needles. Pain. And then all the stuff that’s yet to come: hair loss, fevers, the tangibles that lets the whole world know that this kid is really sick. Ridiculous. Heart Breaking. My world has stopped in its tracks.
I just can’t care about anything else out there right now. The Gap is running a promotion to stop AIDS in Africa. And that’s great. But who runs a promotion to stop kids right here under their noses dying of cancer? That’s relegated to late night TV when St. Jude’s runs their ads of little bald kiddos – all the while most of America is asleep. I care about AIDS. I really do. My brother his HIV positive and I certainly want for him to have continued health. However, I am furious that as far as the NIH is concerned, AIDS is on the top of their totem pole. Don’t get me wrong, cancer gets a lot of attention, too, but pediatric cancer is at the very bottom of where the research dollars are distributed. And seeing that neuroblastoma is one of the trickier cancers in the world of pediatric cancer, well, where does that leave my son? It makes me furious that he is technically “not important enough” to find a cure for. What we as families keep hearing when we ask our politicians for help is that it’s going to take someone “famous” getting neuroblastoma to finally bring awareness. Really? My son is not important enough? That sucks. What these people are willing to “let go” is a beautiful, sensitive, sweet little boy who loves his family, Legos, all things Nintendo, and a sweet little girl named Skyler. It’s not acceptable that I have to live with the fact that my son now only has a 10% chance of survival. Not acceptable.
I’m angry today. I don’t want to go back to this world where my son has cancer. I don’t want to live here again. I don’t understand a God that would allow this to happen. I know, I know. God won’t give me more than I can handle, right? I hear you. I just don’t believe it right now.
It’s time to wake my son. He gets to go to school today. His first day of third grade. He’s so very excited and that’s what I’m living for right at this moment. He is brave enough to still want to be an eight-year-old. Even with all that he’s up against, he still just wants to be an eight-year-old. You gotta admire that.
As for watermelons, well, they’re pretty good about now. August is National Picnic Month, so maybe you should get some watermelon and take your loved ones on a picnic. Sorry I couldn’t focus on today’s National holiday but I had other stuff on my mind.
More tomorrow. 🙂
Found you through a mutual friend (Arica Robbins). So moved by your story and touched by your strength. You and Ben are an inspiration. Sending all of my positive thoughts and energy your way.
I hear your frustration and anger, and I understand it. I have been through life-threatening situations with three children and two grandchildren. Enough already! Time for someone else to provide the training material for medical schools! We survived — and no, I do not think it was because God did not give us more than we could handle. In fact, I don’t think God gave us any of that yucky and stressful stuff. Rather, it came from genetics, from the environment (that man has poisoned), and other reasons that we don’t know yet that have something to do either with free will or the free evolving of nature. What I think God does do and can do is turn all these bad stuff into good stuff — in His own time and in His own way. It took YEARS for me to see that, but now it appears quite clear to me. I think, finally, I understand the book of Job, and I understand it differently from the way many people understand it.
I would recommend that you read Angel Unaware, the story of the birth-defective toddler born to Roy Rogers and Dale Evans. It is a beautiful story that can show a different picture. The author is Dale Evans Rogers.
For my part, I will pray for you, an I will add Ben to the prayer list on my blog.
May God watch over you — and may you see Him doing that even when it seems quite dark out there!
Leave a comment