Safe Space

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. from her heart

 

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.

Going for the Win

I know I’ve shut down a bit lately. Getting the news that Ben’s disease has progressed despite being on chemo really threw me over the edge. This has never happened before. Therapy has always made him better. Yes, he relapses a lot, but therapy has always helped. And now that it isn’t, well, that’s simply terrifying.

The scanning process and receiving the results is a major life stressor. The more I’ve thought about it over the years, the more I liken it to a championship playoff. We’re going in for the game of our lives. Someone will win, someone will lose. And I keep getting those damn shirts printed stating that we have emerged the victor only to pack those shirts away because they end up being a painful reminder of all the losses.

I’ve always wondered what happens to the shirts declaring a victory for the losing team. Right now, my environment is filled with orange and blue shirts touting the exceptional season the Broncos just had. Every-freaking-thing around Denver is swathed in Orange and Blue because we’re WINNERS! YAY! But what about the Panthers? You know they had shirts made declaring them the victors of Super Bowl 50, but since they didn’t win, where do the shirts go? My good friend and world traveler, Melissa, tells me that she’s personally seen losing team’s swag adorning our fellow humans in third world countries, where things like football championships must seem ridiculous in the face of something like, say, starvation. But who cares what the shirt says when it’s protecting you from the elements? I’m sure they don’t care one bit, and, in fact, are grateful to the losing team for providing them with a basic need.

But at what point do you retire? We can’t all be like Peyton Manning and retire after a huge career win. Some of us – most of us – have to make a graceful exit when things aren’t at an all-time high. And how offensive it was – to me – to have Ben’s team offer an option of stopping treatment. Now, I’ve been working on making peace with this shit-storm my son’s been handling for 12 long years. Some days, I have a grip. Many days, I do not. I don’t understand the WHY of my son having to endure and not willing to accept other’s belief that Ben has cancer because there’s evil in the world. Now, I’m not willing to engage in a religious debate, but this is nonsense to me. I can’t do a damn thing about the WHY Ben has cancer. My job is to support him through it. And I am. I wouldn’t change that for the world. If I had to choose between Ben and his battles and a kid who leads a seemingly charmed life, I’d choose Ben all over again. He has made me a better person. He has taught me about unconditional love. And he’s helped me to understand that there is no room in life for hate. Anger? Sure. But hate? No. Except clowns. They’re bad. And ticks. Ick.

So, as we’re sitting in the room waiting for results, I keep my thoughts and feelings on lock-down mode until Ben can process for himself. His Pavlovian instinct to look at me when we get bad news has led me to this decision to keep it together for as long as I can. Ben is in charge of what comes next. I will always offer my input along with pros and cons, but since I’m not physically undergoing these challenges, it’s not up to me. I held my breath when the doctor offered the option of stopping treatment… and of course that’s a valid option, I just don’t like it. And when Ben thoughtfully processed that option and chose to discard it, my silent sigh of relief and flow of adrenaline distracted me from bursting into tears. Reprieve. For now.

But continuing to fight has a whole extra set of challenges. We’re asking his war ravaged body to endure more. To fight harder when he’s already fought so hard. To recover when his body is simply trying to exist… too exhausted from the battle to overcome. How do you ask for more?

Because I believe he WILL overcome. He wants it so badly and I will support him through it all because I take my job as his personal cheerleader very seriously. He still (as he says) has “stuff to do” in this lifetime. He’s becoming such a neat young man right before my eyes. I couldn’t be more proud of his strength and determination and his ability to love and accept. Despite the circumstances. Despite freaking cancer.

And while the shirts touting a recent victory will go unworn, I believe in his comeback. This beautiful child of mine has my unending support. No matter the outcome.

But we’re going for the win.