*Contains a swear or two.
Not long ago, I got involved in a small debate on Facebook over the nominees of the Arthur Ashe Courage Award. I generally don’t like to debate much of anything as I’ve always been the kind of kid who could see all sides of an argument as long as they’re well thought out and argued without cutting everyone else to shreds. I guess I’m a lover, not a fighter. And I hate unnecessary conflict.
Anyway, a friend of mine was stating that Caitlyn Jenner should receive this award because of the courage it took for her to come out as a woman. I agree that it took courage, but I’m also skeptical of anything that those affiliated with the Kardashian clan does because they seem to be in it for the attention and reality tv show deals. They appear to be a 100% “drama added for viewing pleasure” type of people. My opinion. Nevertheless, I understood and accepted my friend’s position, but made it known that Lauren Hill had my support because of her battle with terminal brain cancer, yet maintaining her love of basketball and playing until her battle-scarred body refused to let her.
“But what has she done that’s so courageous?” This was the line of questioning that my friend took regarding Lauren Hill. I decided not to say much else other than I know what I know from dealing with my son’s cancer diagnosis and how he faced it with a courage that I’ve never seen before, every single time.
As most of you know, we recently learned that Ben is facing Neuroblastoma for the fifth time. It’s a bit more aggressive than it has been in the past, and it’s in a few more sites than it has been in his last couple of relapses, so we’re freaking terrified. Add in the fact that his treatment team is throwing around phrases like “quality of life” and encouraging us to make “bucket lists” and making the most of our time together, well, those types of statements ratchets up the anxiety a bit more.
After getting off the phone with the information that Ben had relapsed, Matt and I went upstairs to give him the news. Oh yeah, due to financial issues, I’ve moved back in to the house in hopes of alleviating some of the financial burdens. I have to admit, everything is going very smoothly. I believe we’ve both grown up a lot and are giving the extra effort to function as a team – like parents are supposed to. Too bad so many of us forget how to do that, even those who aren’t faced with a child’s life-threatening illness. Regardless, that’s what I told Ben as I held his hands and cried about a fourth relapse, that we will function as a team. A single tear slid down his cheek. He was just as shocked as we were.
I don’t know why we’re so surprised, Ben has chronic disease after all. They told us it would come back. And it did. Yet, it left us feeling like we had been punched harder than the last time we received this news. I guess it’s something you can’t ever get used to. And living in that kind of shadow is pretty fucking brave. At least, it is to me. Add in the fact that he’s been doing this since he was two years old yet still finds the courage to fight every single time… he’s not only brave, he’s the epitome of a warrior.
Such news is always hard to give. After we had our “cuddle puddle” of everyone surrounding Ben and simply holding him, at some point we had to leave him alone to process. His light was on late. I kept creeping upstairs all night to check on him. It seemed he had retreated to his online friends and video games, so he was coping as best as he could.
The following day, he jokingly told his dad that he wanted a closed casket and at the end of the service, “Pop Goes the Weasel” should be played.
The next day, I held him as he cried. He stated, “I’m going to die before I get to do anything with my life.” I didn’t say a word. I just held him as his tears soaked my shirt. I mean, what can you say to that? I can’t tell him no, he won’t die. But how do I encourage him to maintain hope? How do I show him the options he has to fight this monster without scaring the crap out of him? How does he pick up that pen to sign away the next year of his life to chemo, hair loss, mouth sores, vomiting, and the very real possibility that this will be his last battle because his body is getting so tired?
I don’t want to get out of bed to face today because tomorrow is going to suck. I want to stay in my dream world where monsters are chasing me through a haunted house instead of waking up to the fact that a real monster is holding my child hostage. Yet he sits with that monster every day, knowing all he can do is stay as strong as possible and maintain small shreds of hope that he’ll survive this.
As I was holding him, sobs wracking his small frame, I kissed his soft hair again and again, knowing that the future weeks will take that beautiful red hair away from me. It will take away his strength. It will probably make him smaller yet through an inability to eat. And they want us to make a list of fun things to do. Hurry up. Have fun now. Because what’s coming isn’t fun. What’s coming might be the end.
Yes, signing that paper as a 14-year-old, taking away what shouldn’t be a privilege – the right to be a kid – shows tremendous courage.
Fucking cancer. I hate you. I hate what you’re doing to my son. And as my tears flowed, dripping into his beautiful red hair, I told my son that I would take his disease from him in a minute. I would gladly pay that ransom and let it destroy me instead. Because I simply don’t have the courage to watch him die.
And he said, “Mom, I simply wouldn’t allow that.”
Nothing subjective about that. That is 100% courage.