I sat on his bed for what seemed like hours, gazing at him and looking around his room at the few things he found important enough to display: a couple of hockey items, the plaque he was awarded from the Aurora Police Department, and then the hordes of Nintendo collectibles – his most prized possessions. Most of his down time is spent here, in his safe space, with the Nintendo green walls (the color of his favorite character, Yoshi) that I was initially afraid of when I saw the paint chip, but have grown to love because it is just so… Ben.
Being 14, if I remember correctly, is a time for separating from your parents and finding out a little bit about who you are. How pissed he must be that he has to depend on us to physically take care of him a lot of the time. He must want to run from all of it. Escape to where he can simply be 14. Maybe kiss someone he has a crush on? Skip a night of taking ridiculous amounts of meds. Tell us to ‘piss off.’ Be a little rebellious. But he never does. He seems content in his safe space, playing video games and chatting with his online friends. They don’t care that he’s bald. Some of them don’t even know the battle he’s up against. Ben’s cancer doesn’t define who he is. I’m proud of him for that.
Never once has he felt entitled because of his illness. He gets upset with me when I go out of my way to explain why he’s setting off alarms at the airport (or the Statue of Liberty, or the Denver Mint) with his radioactivity. He doesn’t want anyone to make a big deal over him. And that makes him super cool. At least in my book.
My mind was working overtime that night as I was sitting on his bed. He’d just been released from the hospital and was spending an inordinate amount of time sleeping. Healing. Recovering from the bomb he was just hit with. The bed creaked slightly as I started my retreat, knowing that he would be highly irritated that I was just sitting there staring at him. He surprised me when he reached for my hand, grabbing it with a strength I wasn’t ready for.
“Mom?” he asked, his voice wavering and slightly slurred from the mouth sores.
“Yes, sugar pop,” I answered, knowing I’d been busted doing what all kids dread their parents doing.
“Please. Tell me everything is going to be ok.” His hand gripped my wrist, holding on for comfort. For life. For things I wished I could give him but came up lacking.
Shit. He wants me to be his parent right now. He wants me to give him an answer I don’t have. Who allowed me to be an adult? That was a silly decision. Frick. Ok. Here goes.
“Ben. Everything is going to be ok. Do you know why? Because we have each other and so many people who love us. No matter what, I’m here. I’m with you. And while I have no idea what the future holds, we have the ability to make whatever it is as beautiful as we want, despite the pain you’re going through.”
Sometimes if you say a lot of words, you can sneak out as they’re processing what you’ve said. They might call bullshit later, but I had to stop the hemorrhaging. Temporarily bandaged and holding breath, holding breath, holding breath…
“That’s all that matters, mom. I have you. I’m so fortunate.” Did this kid really just say that he’s fortunate to have me? With that bullshit answer? Maybe I knew what I was doing after all? No, I don’t. I am definitely “winging it.”
“Thank you, Mom.” I felt a wave of relief flow over me. His grip on my wrist relaxed. I know he’s scared. I am, too. We all are.
The next morning I woke to the news that Delaney had died. For those who didn’t know her, well, she was a force of nature. She, too, had been fighting Neuroblastoma for several years and had made the decision to stop treatment a few months ago because her disease was progressing. She was well known for her activism, doing PSA’s for Childhood Cancer charities and spreading awareness with her infectious smile. She was even featured on a billboard for values.com with her dear friend and founder of Peach’s Neet Feet, Madison “Peach” Steiner. Peach makes beautiful hand painted shoes for kids with life-threatening illnesses. She’s super cool.
Anyway, we knew Delaney’s time here was limited but it didn’t lessen the impact of losing her. It was devastating. We initially made the decision to not tell Ben right away because he was still so exhausted from his latest round of therapy and was struggling emotionally. Unfortunately, we had clinic that morning and there was no way to hide it. Delaney treated at the same hospital, and it was evident that something was wrong. You don’t lose a kiddo like Delaney and not feel the whole world mourn. The heartbreak was palpable. So I told Ben and immediately broke down myself. I felt the threat of all I’d said the night before to be taken as nothing less than a simple platitude. And I hate that. I hate platitudes. My cover was blown. Everything was not going to be ok. I can’t make that happen. I don’t have a very safe space to offer my son. But somehow, he gets through another day of riding through this life with death sitting shotgun.
This is why Ben will rule the free world when he’s old enough. IF he gets the chance to become an adult. All these other little whiny crybabies who feel victimized just don’t understand. I’m mainly pointing at America’s young adults who get upset and need counseling because they saw something inane. Here’s a good example: https://www.washingtonpost.com/news/grade-point/wp/2016/03/24/someone-wrote-trump-2016-on-emorys-campus-in-chalk-some-students-said-they-no-longer-feel-safe/
And statistically speaking, more than a few of these people feeling unsafe about seeing “TRUMP” written in chalk on the ground will get cancer in their lifetime. How on earth will they ever deal with that? There’s no safe space that will protect you from “life.” So the best thing to do is simply live it. Adversity happens. Sugar coating and safe spaces might give temporary respite, but it’s maddening to see just how weak we’re becoming as humans. Look. I am (as one of my conservative friends calls me) a “pinko commie.” I love my fellow humans and am all about feeling good and loving my neighbors and spreading love and light wherever I go. I’ve experienced enough tragedies in my time that I really believe my calling to be a healer of some sort. I believe in “wellness.” I know life hurts. But I also know life to be beautiful. And seeing “Trump” written in chalk on the ground in a public place and feeling victimized over it? My advice? Wait for the rain to wash it away. This is not life altering. It doesn’t even come close to making the list.
– There is a “list,” by the way. Learn more at: http://www.healthcentral.com/anxiety/c/157571/115211/life-predictors/
Thankfully, I have a master to learn from. Benjamin understands that life is not fair and something along the way will make us feel unsafe or unloved. Crying and throwing tantrums about it will solve nothing. I’m proud of my young man for the beautiful human he is. Love and compassion goes a long way.
And while love and compassion might not be physical in its existence, that’s his safe space. And mine, too.
Jesus Christ you are an amazing writer . I’m suppose to be seeing patients but I’m all teary eyed reading every one of your words. I had to look up the word “platitude”. I freakin’ hate platitudes too , but I’m sure you have more reason to. I think you gave Ben a great answer. I can’t imagine the heartache of seeing your beautiful Ben going through this over and over again. He’s amazing. Simply amazing. He WILL rule the world given the chance. Huge him for me. Extra long hug please.
I love you and your wiser than his years son.
You have stolen my heart Sarah. You make us look at life differently, We appreciate it more because of you . Your a brilliant writer and I just know some day we will all be buying books penned by you. And…we love Ben. He also has made us better human beings. We certainly need more Bens to set us straight on how to live life, how to be genuine Christians. We love you all and are praying , we are here. Thank you Sarah! God Bless!
Sarah, you words never fail to bring it all back into perspective and of course make me cry. You are an amazing woman, friend and mother. I’m blessed to know you. We’re always here if you need anything.
Lisa ~Hope’s momma
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