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 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:

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:

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.


Kirkersville, Ohio – the place where I grew up – is a teeny tiny village about 25 miles east of Columbus. The population of this village nestled along the South Fork of the Licking River is approximately 500. I didn’t even know I grew up along the South Fork of the Licking River, (which I found in a Google search,) it was just “the creek” to me. All I knew was that we had one stop light, two bars, three churches, one bank that kept getting robbed, a carry-out where I purchased my hordes of Swedish fish, the Kirk Kone (my first place of employment) and National Trails Raceway in the next town over. I think the raceway was the biggest reason anyone ever came to our neck of the woods, and I learned at a very young age how to deflect the flirtation of unsavory race fans. Not all race fans are unsavory, mind you, but the ones who flirted with me were. Here’s a sample of what that might have looked like:

Scene: Small Town, USA, hot summer day. Kids riding on bicycles to the corner to get ice cream only to find the miniature parking lot overrun with motorcycles – a pit-stop on the way to the local race track. Several large men clad head-to-toe in leather (except their arms, which were bare – perhaps in an attempt to even out their farmer’s tan?) waiting in line at the window to get ice cream from a small, red-headed, flat-chested, girl.

Unsavory Race Fan (URF): “Hey cutie. What time do you get off work?”

Underage Sarah (Me): “Um, I’m only 13.”

URF (with furrowed brow and slightly blank stare) “Didn’t ask how old you was, I asked what time you get off work.”

Me: “Never. Here’s your cone,” which I purposefully made to resemble the leaning tower of Pisa.

Even at 13 I was a cynical little shit.

Kirkersville also had one funeral home, one of the scariest nursing homes I’ve ever encountered (I have a slight case of gerontophobia,) and an elementary school. I lived right next door to the school. Sneaking over the fence on school days instead of walking all the way over to the gate was my preferred method of getting to and from school, but I usually got caught in the act. Probably why I’m not a big trouble maker to this very day. Well, except for rearranging other people’s lawn ornaments. I love doing that. I was particularly fond of making it look like they were all looking in a window of whatever homeowner I was harassing at the time. Sneak in, rearrange, and sneak out. I was a pro.

But I digress (again.) The whole reason I bring up my beloved Kirkersville is because I got a phone call from the former Principal of Kirkersville’s elementary school , Mr. Tom Lilly, two days ago. Apparently, I never returned that book I borrowed from the library: “The Night Dad Went to Jail.” It has come in handy over the years, but I didn’t immediately confess to still having it.

Just kidding. He called to tell me this:

“I’m proud of you.”

A man who knew me over 40 years ago as a wee lass took a moment out of his day to call me. How he remembers me is beyond my thought process. I was quiet. I mean, wallflower quiet. The only time I stopped by the office was to see the nurse (I was also a hypochondriac) or to get pencils from the vending machine. It was one of my favorite pastimes because all the pencils in the machine had quotes from the Revolutionary War. I tried to collect them all but kept getting Patrick Henry’s famous quote: “Give me Liberty, or give me Death.” Regardless, Mr. Lilly was always there, always smiling, always kind. I’m proud to say that I never received a reprimand directly from him. This was back in the day when corporal punishment was still allowed. I can understand remembering the “troublemakers,” but not a kid like me. It just tells me that he was a very kind man heavily invested in every single one of his pupils.

I adored him.

During those elementary years, I didn’t have much contact with my biological father. He left when I was four. I went to his house on some weekends, but he wasn’t really around when I visited. Honestly, he has never been my “dad,” except for the procreating part. The whole “father” concept was foreign to me. I know divorce is not out of the ordinary today, but 40 years ago, not many families were like mine. I was certainly one of a very small club. But Mr. Lilly was my school dad, and that’s about as close to anything I had for a while. And he always smiled. The kind of smile that warms the eyes and says “I’m here.” Genuine. That’s the word I’m searching for. Mr. Lilly was genuine. And still is.

So, for him to call to tell me that he’s praying for us, thinking of us, and so very proud of us, well, it made me cry. Not like the getting paddled kind of cry, but tears of heartfelt happiness. Hearing that from Mr. Lilly was a great source of strength. I felt fortified. Ready to fight some more. Confident that I’m making good choices when it comes to my children.

Sometimes we all need a little encouragement. I don’t care who you are. It feels good to hear that someone thinks you’re doing a good job. And for this man who patted my head as a lonely, quiet schoolgirl to extend the same hand to pat the same head all these years later, well, that’s pretty special.

Thank you, Mr. Lilly, for continuing to be here for me all these years later. I just can’t tell you what it means to me. Much love to you. <3

And I hope I never rearranged your lawn ornaments.





Love and Loss

Gah. Where to start? All the celebrity death? Losing important members of my musical family – the musicians who babysat me during my formative years when I felt super weird in a ’round-hole-square-peg’ way. It turns out that I was not weird at all from the casual observer’s viewpoint, but the insecurities of my childhood led me to these musicians who were making the most of their weirdness and I wanted to “fit in” with that. Dancing around in my Days-of-the-Week underwear, which I never wore on the correct day – Tuesday could be worn on Friday without the Universe falling apart – to “TVC-15” by Bowie and knowing every lyric to “Queen Bitch” at an impressionable age. Wearing my mom’s wigs while belting out “All the Young Dudes” performed by Mott the Hoople (who recently lost their drummer, Dale Griffin) and was famous – mostly – for covering a David Bowie song. And Glenn Frey, who I didn’t love as a solo artist, but adored as an Eagle, and even had the privilege of having him and Joe Walsh sing Happy Birthday (to ME!) on my 24th birthday (my college BFF, Paula, can verify this claim.) So, I’m sad about those losses for sure, but understand that they will live on through my MP3 player, CD’s, vinyl, cassettes and 8-tracks. Yes, I still have some 8-tracks.

Since my last post so much has happened. I broke up with a minor family member after confronting him on some bullshit he said about me at a minor family gathering where I was not present. I have a LOT of steps and halves and related-by-marriage nonsense since my biological father has made it his mission in life to marry multiple women with a shit-load of kids. I liked this particular kid, no, I loved him. He was my favorite out of the whole lot. But he went on to explain that everyone was sick of hearing about my “cancer-kid” and that I should stop playing that card. After all, he had a co-worker who died from cancer so he knows EXACTLY what I’m going through.

Let that sink in for a minute.

Yeah. It hurt. A lot. I know people are sick of our situation, but none of you more than Ben. Trust me. I’m sure he’d much rather be a well child who hasn’t spent the last 12 years fighting a horrendous cancer, but this is the hand we’ve been dealt. While my heart hurt over what this relative said, I don’t feel a bit bad about permanently severing that relationship. He handed me the scissors. I made the cut. I have to take it for what it is and move forward. But it still hurt.

Speaking of always talking about cancer, Ben’s last scans showed no change. It’s good that it hasn’t grown or spread, but it’s bad that the tumors didn’t dissipate with chemo. We’ve been talking with Palliative Care to discuss horrible things like bucket lists and quality of life and making the most of every-single-minute. But trying to get Ben to tell us what he wants – what would make his life better – he has minimal thoughts on that. Or, I guess, he’s not sharing with us what he wants except that he wants to see a volcano. When pressed, he simply states, “I just want to spend time with you and dad and Midge,” (his nickname for Maddy.)

I have to applaud him. If I were asked about my bucket list, I’d be quick to rattle off things like seeing the Northern Lights from a glass igloo in Finland. Getting some work done on my turkey neck. Seeing a game in every NHL arena. Taking a craft beer tour of the US. Visiting the five states that I haven’t been to (AK, ND, ME, VT, NH.) Taking a yoga retreat in an exotic destination. Getting published. And then spending my waning days in an adjustable bed bingeing on Netflix and potato chips, while periodically peering into a mirror to admire my youthful neck, surrounded by the people I love.

But Ben isn’t a taker. He doesn’t want people to feel compelled to make his life better. Over the holidays, we were invited to a party for “There With Care,” a wonderful charity that has given us so much since we’ve lived in Denver. The party-goers were asked to bring a gift to donate to the myriad of affected families in Colorado. When we walked in to the event, there were literally tables overflowing with amazing gifts. Ben and Mad were told to choose any present they desired. I mean, there were brand new iPods! The 64-gig ones! So, when Ben chose a $25 gift card to Target and Madeline followed suit, my heart exploded. I marveled over the fact that I – a self-absorbed asshole who probably would have nicked the 64-gig iPod – have raised two of the most non-asshole-y kids in the Universe.  And for one of them to have to worry about getting an extension on life while the other is worried about losing her only sibling, well, they deserve to be a little bit of an asshole. Yet, they aren’t. And I’m proud of that.

I can’t imagine what goes through Ben’s quiet mind. We just passed the two-year anniversary of when his co-warrior, Justin, lost his battle. We’re currently waiting for any crumb of information about another Colorado-based Neuroblastoma warrior, Delaney, who is quickly nearing the end of her battle. I just can’t imagine this loss and pain and how it affects my son. I know how it affects me. I’m terrified. It breaks my heart that all I can do is pat Ben’s hand or give him a hug as the devastation continues to roll in, relentless as high tide. Platitudes aren’t life preservers. I know that for a fact.

But love is. The loss keeps coming but the love keeps us afloat. And we are so thankful to every single soul who takes a minute to think about us, or goes to the amazing extreme – like my sister – who gave the entirety of her family’s Christmas fund to us so we can take our Ben to see a volcano when we get a break in treatment. Beautiful gestures like that make it easier to let go of the hangers-on trying to make us feel icky. We feel enough of that without your help, thank-you-very-much. And from here on out, focusing on the love is an integral part of my mission.

So, I highly recommend you strip down to your underwear and dance to your favorite music, whether it be classic rock, country, or, heck, even Slim Whitman if that’s what you’re into. Anything will do. Invite the love in and let it soothe your soul. We all deserve that from time to time.

And if you get in trouble at work or arrested at the grocery store for public indecency, tell them it’s for Ben. If that doesn’t work, hopefully you read my jail-experience posts a couple of years ago. There are some helpful tips in there.

Sending so much love to all of you. So thankful for all that’s sent to us in return. <3





Happy f*cking holidays

*Directions* – please put on your humor glasses before reading. Some effects are in 3-D.

The past month of my life has sucked old man balls. No offense to old men and their dangly bits. Well, maybe just a little. Since men traditionally age so much better than women maybe I’m just angry that my face is showing its age so much more this holiday season – and men can always (and usually do) cover their testes with clothing. I needed to make a crack on them to make myself feel a tiny bit better.

Just follow along, friends. It’s for my mental health.

I won’t go through everything that’s bringing me down this holiday season, because, Hey. I care about you. I want you to have a happy season. (You’re welcome.) But the highlights include:

*one totaled Subaru named Suzanne – on Thanksgiving, no less. Oh, and this is after a long day of chemo for Ben, because, why not make my most despised holiday even shittier?

*one dead hamster named Liz Lemon, which added a whole lot of insult to the bullying injury my daughter was already facing. Sixth graders, man. Why adolescence has to happen at all will always remain a mystery to me. Add in a dead hamster and watch the emotional eruption cover your holiday season like hot ash covered Pompeii. They’ll unearth me someday, curled in a fetal position, sucking my thumb and holding a perfectly preserved fruitcake.

*three panic attacks that ended with me passing out, one in the comfort of my own kitchen, another outside of the house after an Avalanche game (we won… I’ll chalk the passing out to the AVS actually creaming an opponent this season) and the other in a very crowded IKEA. Check YouTube for “Middle-aged woman wearing yoga pants passes out while browsing ANGSSKARA duvet covers.” I’m sure it’s trending as I type. Everyone just assumed I was diabetic. Never have I had so many people trying to throw orange juice at me at once. It was like a citrus stoning. It ended without much excitement, I finished shopping and Matt is putting together the KELLAX shelving as I lay here recovering.

I’m sure I could compile all the nonsense that’s occurred this month and come up with my own twisted version of “The Twelve Days of Christmas.” If only I had the energy to write it….

The holiday season has always left a lot to be desired. I’m not sure if it was the drama of shuffling between broken homes or all the food that touches each other or watching step-siblings get awesome presents while your biological father tells you yours had been stolen out of his car, so there was nothing for you that year (I wish I were making that up for dramatic purposes. Don’t tell him I know the truth… he thinks I still believe his bullshit.) But it’s always left me with feelings of inadequacy, no matter what I’ve tried to do to release it. And, of course, once I had my own children I felt compelled to make it the Best. F*cking. Event. Ever. Overcompensate much? Sure. I’m guilty.

But this year will be different. It’s about the memories instead of the stuff. I don’t subscribe to any religion, so I guess some would say that I shouldn’t celebrate at all. Not that I don’t believe in Jesus, or Hanukkah’s celebration of the rededication of the Holy Temple, or the first fruits of Kwanzaa – I do. I believe in it all. What it comes down to, no matter what you believe, is this time of year means gifts. And family, even if they’re horrible. And friends, if you have any. And, whatever tradition you decide to bring to the table. So, in addition to buying one thing for each child that they really and truly want, the rest is about having fun. Going on an adventure. Experiencing something new. We’re going to roll around in giant hamster balls (as long as it’s not mentally taxing for Madeline to be reminded of hamsters) on the snow and swim in some hot springs and eat Chinese on Christmas Day and enjoy each others’ company. Let’s see THAT get stolen from the car.

And whenever something horrible happens, I do try to balance it with the good: I got a newish car. She’s beautiful. And my daughter went back to school last week, bravely making the decision to not let other turd-balls screw with her mental health. While she still mourns Liz, she’s doing her best to find the joy of the season. My son finished his second round of chemo and is on the upswing to physically getting stronger. Scans will occur the week after Festivus, which takes place on 12/23 for those who are interested, and hopefully we’ll learn that he shows no evidence of disease.

As for those pesky panic attacks, I’m going to embrace them. There’s not a freaking thing I can do about them because my stress level never dips below a full tank. And it’s a good way to get random people to bring me water. I did, however, join a depression club through Children’s Hospital where the 10th punch gets me a month’s supply of Prozac gratis. So I got that going for me.

Actually, I have a lot going for me. I just like to complain. And moreover, I like sharing my complaints with you. Because you love me.

You all truly love me. What would you do without my wicked sense of humor and discussion of old man balls? I bring levity to your life. Admit it.

And that’s a freaking Christmas/Hanukkah/Kwanzaa/Festivus miracle. Shit. I’m pretty sure an angel just got their wings.

Love to ALL of you this glorious, f*cking holiday season.


dark hours

I hit a big freaking wall yesterday. It wasn’t a slight fender-bender. No. It was a full-contact, crash-test-dummy-ejecting fiasco. For half a second as I was flying through the air, I felt a brief embodiment of joy as the last bit of my sanity was stripped away from my soul – which in my mind sounded like velcro being pulled apart – as I embraced the thought that impact was coming soon and would put me out of my misery.

Of course, all this really means is that I cried really hard for a really long time. In fact, I cried so hard that I fell asleep really early, which is why I’m awake and writing this at 3:10 am.

These early morning hours are the hardest. I just lay here thinking of all the things that are not going as planned, which is darn near everything. He’s asleep in his room after making it through another day of being my quietly brave boy. Without making too much noise, I go and check on him while he’s asleep. He can’t protest my making a big deal over him if he’s not aware that I’m doing it. I find that beautiful pulse on his wrist as I gently hold his still hand, willing my heart to beat in time with his. Feeling the connection. Committing to memory. And wondering…

How long?

Being mad with myself for thinking that way even though people are talking that way. Make the most of it, Sarah. Make it magical.

That’s a tremendous amount of pressure. Especially when I’m flying through the air waiting to land in a world where my son doesn’t live. And I’m left with the memory, fearful that my mind won’t remember just how it is. How beautiful. How amazing. How powerful he truly is and what a blessing he is to just about everyone on this planet.

I’m grieving. I feel guilty about that because he’s still here. But I can’t keep up. It’s like I’m at school, taking notes for a test. Wait! I missed that last bit! Can you repeat it? Will it be on the test? What if I forget?

What if I fail?

And opening up my inner-most self here to everyone. Anonymous readers. Most wonderfully supportive. Some anxious to be critical. Others wanting to convince me that “he’ll be in a better place.” Telling me things I don’t want to hear. Like a piece of mail I know contains terrible news and simply refusing to open it in hopes that it will go away.

But these are the dark hours. It won’t last for long. My fit of exhaustion will finally win and give me respite for a while, recharging enough to get through another day.

And somehow finding the strength to make it through.


Making headlines

I do spend a lot of time on the computer, so I’m no stranger to the trending sensation of sensationalism. I just saw a headline a few minutes ago that said, “What the mechanic did to this woman’s car left her in tears.” Well, we’re expecting some horrible story about how this evil mechanic left the oil cap off, which caused her engine to blow… but not before she realized that the mechanic had also stolen her Yankee Candle air freshener AND scraped off her bumper sticker advertising the high intelligence level of her child. But this is not the story at all. She was broke, needed her car to get to work, and the mechanic helped her out. They tricked us! We were expecting some downright evil sh*t but got a happy story instead.

What is wrong with us? Why do we respond to horrible things? It seems that there’s a piece of us that wants failure to reign so we can “SMH” (shake my head for those of you still learning today’s popular abbreviations.) Instead of following these misleading headlines, you should simply follow Ben’s page. It’s heartbreaking enough to satisfy all your demented needs. 😉 Oh, stop SMH at me… I am adding a little drama to spice things up. It’s what you crave, right?

If you’re new to our world, you should know that I exist solely on the love of my children, doing yoga, writing, potato chips, and a completely warped sense of humor. Oh, and a handful of meds for a variety of inadequacies I’ve been genetically and emotionally exposed to. If I couldn’t inject humor into this crap hand we’ve been dealt, well, I do believe I would have jumped off something very tall by now.

At some point, you just gotta laugh.

I recently made plans to take Maddy to Los Angeles. One of our conjoined bucket list items was to go to the “Dia de los Muertos” festival at the Hollywood Forever cemetery. We’re both creepy kids and LA has quite a lot of creepy things to do, especially around Halloween. So, since it was my daughter’s fall break, I wanted to do something with – and for – just her. She’s been so patient for the entirety of her life, playing an important – but rarely glamorous – role in being the younger sister of a critically ill kid. She deserved this trip. So, I planned. My dear friend, Melissa, set us up with her MIL, Astrid, who gave us a beautiful place to stay AND a car to use. There would be tickets to attractions so our trip would be jammed with fun stuff to do. All we had to do was get there, and flights worked out to be extremely reasonable. I booked it. Maddy was thrilled and immediately started a countdown calendar for the trip.

Then, a couple of weeks before we were due to leave, we got the news that Ben had relapsed. This would be his fifth fricking time fighting neuroblastoma. As we discussed options with his team, they kept talking about that week – our fall break – as when he’d probably be suffering the fallout from chemo. Sh*t. As we were mulling over the options, Matt and I discussed canceling that trip. I knew it would break Maddy’s heart, but I thought it would be best.

Before I could discuss it with Mad, she went to Ben on her own and said, “Mom and I don’t have to go out of town. We can cancel it if you’d like us to stay here with you.” My eyes welled with tears as I heard her offer up the one thing she had to look forward to in order to care for her brother. Then Ben said, “I’d be disappointed if you didn’t go, Madeline. You deserve this trip.” I had to walk away, mostly because I knew the kids were tired of seeing me cry.

Ben was throwing up the day we left for LA. He had developed a horrible and painful rash all over his body. It was tough to leave, but knew he was in capable hands with his father. While we kept in constant contact with Ben, Mad and I had a ridiculously good time. She repeatedly thanked me throughout the trip, often exclaiming that she was having the best time ever! It was a priceless experience for us, and gave us some much needed time together.

Ben was admitted to the hospital the day before we returned. That last day was challenging to keep our mind on vacation, but I reminded Madeline that Ben wanted her to have a good time. So we did. And when we returned to Denver, our first mission was to rush to Ben’s bedside. The rash was gone and his hair was starting to fall out and have to use a hair system. I felt the familiar tightness in the back of my throat when one of those pesky panic attacks comes to visit. No, the cancer and the sadness of our situation had not disappeared, but the trip had offered me a much needed respite. And that’s ok.

A few have questioned how I could leave Ben at such a time. Don’t worry, I get inappropriate messages from people all the time. Everyone has an opinion on how I should do things, but I’ve realized that my opinion is the only one that matters. So go ahead and judge. I don’t need to make up a headline like “Mother leaves cancer-stricken son behind to frolic in LA.” I needed to give this gift to my daughter. I needed to take this moment for myself. I wouldn’t change it for the world because we had SO MUCH FUN, PLUS we had Ben’s blessing.

So, for those who are SMH at us for trying to make a happy story out of a sad headline, please find another story to follow. I think we’ll be okay without you. But for those who truly love us and are following our story to offer support, this “Mother is grateful to people rallying around cancer-stricken son and family.”

Succinct. To the point. Truthful.

The end.


Courage is subjective

*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 treatment, 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.


A gift of hope

This has been a most trying week for your good friend, Sarah. (Oh no, there she goes referring to herself in third person again – a sure sign that she’s lost her mind.) We’ve had insurance issues that cannot get resolved, life issues that keep mounting, and, of course, the “usual” rigor of putting Ben through another round grueling therapy meant to save his life. Besides the last issue, which will always take precedence over the other “crap,” the other stuff can simply piss off. For as of this morning, I’ve lost another dear friend to the evil and dreaded cancer.

I met John Enterline 13 years ago while I was working as an HR manager for CorporateOne Federal Credit Union in Columbus, Ohio. It was the last “official job” I held before my two-year-old son was diagnosed with stage IV Neuroblastoma. Despite being in the position for only nine months, my co-workers remain an important part of my family to this day. They came to Ben’s bedside during those first critical weeks. They called, sent emails, provided food, visited, cried with and pledged their undying support to me and my family. It was one of the only places I’ve ever worked that had a true love and respect for their employees. Their support has never wavered – even after Ben’s 11 years of relapse after relapse.

While I cannot think of a single co-worker without anything but loving kindness, John stands out above the rest. I knew him to be a fairly quiet man; a constant observer. He had a kind heart, and we would often chat about boring life stuff in the kitchen each morning as I was making my instant grits. (Don’t judge… I’m 1/2 Southern, which is why I like grits, and 1/2 Northern, which is why they’re allowed to be instant grits.) Regardless, I enjoyed my morning chats with John. We had a love of photography in common, so that was often a point of discussion.

When Ben was diagnosed with cancer, John presented me with a small gift-wrapped box. As he placed it in my hands, he clasped his hands around mine and said “Please give this gift to Ben when he turns 18.” Ben was two years old at the time, and 18 seemed so far away. Tears streamed down my cheeks because I felt it was highly unlikely that my son was going to see his 18th birthday. At least, according to his doctors. I knew that Ben had less than a 20% chance of long-term survival. John knew that, too. And while I was buying what the doctors were telling me – that I would lose my son well before he had the chance to turn 18 – John chose to hold on to hope.

I promised John that I would. I took the small box, gift-wrapped in a shiny, vibrant green foil, and put it away.

Over the years I’ve moved it from place to place, from Ohio to Colorado and wherever else my road has taken me over the last decade. I’ve let Ben hold the package, knowing that he has this box to look forward to opening when he turns 18. I let John know a couple of years ago that Ben was really looking forward to that day, and he said “Awwww, I hope he’s not too excited. The gift really isn’t that big of a deal.” I immediately disagreed and told him that it didn’t matter what was inside. The contents were insignificant. The love surrounding it was the important part and Ben was the sort of kiddo who would fully appreciate that.

Then, my friend John learned he had cancer himself. Shortly after his diagnosis, he reached out to me. He told me that he was in awe of Ben – now more than ever – because John was experiencing first hand the horrors of cancer therapy. He wondered how a child could be subjected to the same harsh therapies that adults were receiving. And the fact that Ben had been in treatment for over 11 years was stunning to him. He told me in a note that “it’s just not fair” and that he was still praying for Ben. Always one to think of others, that friend of mine.

Not too long ago, I received a message from him stating “Ben is my hero!!! You can tell Ben that I’ve been praying for him and he has my love and admiration.” Shortly after receiving this message, my CorporateOne family let me know that he was struggling. Two days ago, my friend told me that he had lost consciousness. His once fidgety movements had gone still. He most likely only had hours left.

I thought hard about John as I was walking with Ben through mid-town Manhattan yesterday. We’ve just finished up the last of this particular study and are now in the stressful moments of awaiting the scanning process, praying that there’s no cancer hiding in my son’s body. I took Ben’s hand and let him know that the friend who had given him that shiny green package so many years ago was getting ready to leave us. He closed his eyes. I have no idea what my child was thinking at that time, but I’m sure he was sending John all the loving energy he could muster.

As we carried on with our journey toward the Ronald McDonald House, I looked toward the East River and saw the most magnificent sunset reflected in a mirrored building. I thought about how much John would have liked that… I bet he would have had his camera at the ready, wanting to capture it and share it with everyone else. I smiled through the heartache, hoping he felt my love surrounding him.

I woke up this morning to a text message stating that John had left us around 6:45 this morning with his nephew by his side. He left behind many adoring friends and family, a collection of stunning photographs he’s taken, kind words to a heart-broken mother begging for her child’s life to be spared…

And a shiny green box filled with hope for my son.

All my love to my CorporateOne Family, John’s family and friends. I’m so sorry for this devastating loss.

Common Courtesy

A couple of weeks ago, I was coming out of Target and had the privilege of watching an oversized SUV as it ran into the front of my car. I stopped in the middle of the street, my arms outstretched in the universal pose of “what the frick was that?” as the couple exited from their grand vehicle, not giving my poor car another glance. Granted, it was a hit to my bumper and only pushed the car back slightly, but it was still a hit to my car. As they passed by me, oblivious, I asked them if they gave a crap that they just hit my car. The man looked at me and said “it didn’t beep. My car always beeps before it hits something, and it didn’t beep.” I’m sure my facial features twisted incredulously as I asked “okay, you didn’t hear it, but did you feel it?” His companion piped up that she felt it, but he wouldn’t answer.

I was dumbfounded for about two seconds, contemplating how many things this man must hit that he relies simply on auditory tones to alert him to when he’s being a poor driver. I understand that this feature is something manufacturers are installing in newer models, but since I haven’t owned a model later than 2004, my main luxury is a CD player. I’m out of the loop when it comes to super cool options. Regardless, I was overwhelmed by the lack of concern: no beep, no hit. He did walk back over to my car with me to assess if there was any damage. There wasn’t. He apologized. I got in my car and found myself repeating “no beep, no hit,” and cackled with the high pitched bursts of laughter of someone who might be teetering a bit too close to the edge.

When did we become so dulled to our surroundings? We have an app for everything now that alerts as to what’s going on in our world. We can set alarms, find a place to eat, schedule appointments, store loads of information in our phones – the list of what these miracles of technology can do is extensive. Even in NYC, the busiest place I’ve ever experienced, everyone walking down the street is glued to their phones. I wonder when Apple will install an app called “you’re gonna run into that person if you don’t look up from your phone” which will emit a long, obnoxious beep before you crash into another human being.

Everyone in my immediate circle is guilty. We all love our phones. We read, play games, check news, etc. They are awesome! I once forgot my phone at home for an entire day and I felt lost. My life seemed to be empty without my little electronic nugget of support. But what are we losing in translation? By keeping our eyes trained on the little electronic blob that probably causes cancer, we miss out on so much. We’re becoming insensitive. And I think we’re angrier. Sure, we have the whole world electronically at our finger tips, but we’re ignoring life.

While email and blogging and facebook have been instrumental in keeping people updated on Ben, it comes with a certain price. It seems that everyone has an opinion and people feel safe when they’re hiding behind their keyboards. It gives them the ability to say really horrible and hurtful things. Sometimes from a simple misunderstanding, but other times because people can simply be turds. I was recently reading an article about a Texan hiking a technical climb in Colorado. He slipped and fell quite a ways and he died. The comments on the article ranged from “I’m so sorry for his family” (appropriate) to “That’s what a Texan gets when he comes to Colorado.” (Super inappropriate)

Who on earth finds that sort of statement okay to put out there? Now, I have a weird sense of humor, and sometimes my meaning is lost in translation, but a statement like that is simply cruel. It reminds me of a time when I first started blogging and someone posted, “I hope your son dies.” I stared at that comment for a long time, wondering what kind of person would say such a thing. Thankfully, comments like that are few and far between, but they still happen. One dude castigated me after Ben’s MIBG story aired on the news… he was insistent that weed was the answer and I was too ignorant and “scared of weed” to know that I could save my son’s life with marijuana. Now, anyone who knows me well enough knows my stance is in high support of medical marijuana, but it is not the answer for Ben. I know that. His doctors know that. This tool who was so sure of my ignorance doesn’t know that. The internet has created a lot of “self-made experts,” but it hasn’t taught them any freaking manners. And while I take all of their comments with a grain of salt, I have to understand that opening our lives up to the general public like this puts us at risk of running into some big time crazies. I know I need a thicker skin.

But people also need to learn some flipping manners instead of simply waiting for their app to tell them what to do next.