Stronger Than I Look

There’s a tremendous backlog of information taking up space in my brain – so many things I’ve wanted to write about but haven’t – so I’m calling this post “brain dump” and whatever comes out comes out.

2017 has been quite the roller coaster. January knew that our swing was weakest when it came to her curve ball, so here’s what she and her “sisters” (especially the “extra bitchy” sisters named June and October) threw at my son: 1) relapse #5, 2) more radiation/chemo/surgeries, 3) scary progression of disease despite treatment, 4) MORE radiation, 5) No Evidence of Disease!  YAHOO!! 6) two precious months of hearing nothing from cancer, 7) only to find out in October he’s facing relapse #6… and the cycle begins again.

Ben’s on a daily oral chemo. He isn’t losing his hair but he feels like crap pretty much all the time. We haven’t changed how we approach this beast, Ben is still in charge of choosing (or not choosing) the treatment plan. Unfortunately, at this stage of the game, there aren’t many choices. And the options that do exist are terribly unpalatable. Right now this daily chemo regimen is the best option available.

The biggest change we’ve made was pulling Maddy out of school. She’s working with the same home/hospital teacher as Ben, which is awesome because we love her. Anyway, the school year got off to a rocky start for Maddy. An incident occurred that shook her to the core. I will not share details out of respect for my beautifully brave daughter, but it was enough to generate some pretty intense anxiety. And then once we received news that Ben had relapsed again, we realized that sending her to school to dazedly shuffle through the halls wasn’t what she needed. She wanted to be with her brother, so that’s what she’s doing. Her friends have totally rallied around her in support, coming over on the weekends for sleepovers and the usual 13-year-old stuff. Her pals are amazing and I’m greatly indebted to them for bringing any amount of joy to her life.

I keep trying to write about bucket list right here but I’m struggling. So let’s say this: we’ve had some neat experiences over the past couple of months… we road-tripped to Yellowstone, we spent a week in the mountains, we’ve gone zip-lining, and segway-ing and done clue rooms… but I think Ben has decided that a big trip to Hawaii is out. I’m not sure when he shifted away from that, but he started thinking instead about a trip to Ireland. After some consideration, he ditched that idea, too. So, here’s what we’re doing: Ben does not have friends in the traditional sense. He doesn’t have sleepovers. He doesn’t go out with his pals. But he does play online with LOTS of kids his age all over the US. I didn’t realize he had this wonderful network of friends that he’s been playing video games with for years. They have become his closest compadres. Don’t worry, we are vetting each and every online persona to make sure they aren’t 56-year-old pervs still living in their parent’s basement. And then, once they pass the “background check,” we’ll figure out a way to get them all together for a heck of a party. I was completely humbled by his idea of wanting to meet the very people who have had his back all these years.

Dr. Macy reminded us that Ben reaching NED status again is unlikely, which she immediately followed up with “but he continuously surprises us.” My take-away from that is that there is still hope. For whatever reason, this is our life. I don’t understand it. Sometimes I hate it. Many days I’m confident that it’s going to kill me soon. In fact, a moment of me grabbing my left arm and grimacing in pain led Matt to ask if I was having a heart attack. My response was “I really hope so.” I don’t think I meant it, but it sure flowed from me like it was the winning question on Final Jeopardy. Regardless, the pain dissipated and I’m still here to fight another day.

For now, I’m taking my cues from plants living life above the tree line. If you’ve not traveled in the mountains, the “tree line” is defined as an imaginary boundary above which trees will not grow. This line in the Rocky Mountains is somewhere around 11,000 feet. Anything above that has no shelter. Just the blistering sun, threatening storms, avalanche danger, rugged terrain and the wind whipping, sometimes at a hundred miles an hour. It’s difficult to survive above the tree line. But what these beautifully tough, yet delicately fragile plants do is lower their center of gravity and hang the fuck on. They ground themselves. So, that’s what I’m doing, too.

I see you coming, storm. I hear your roar. And I know you’re coming for us, bent on destruction. I’m tired. I’m scared. But I’M STILL HERE! I may not be standing right this second because your adverse weather pattern over the last 14 years has beat us down every damn chance you get. But guess what, bitch?

You haven’t won yet.

It looks like I’m becoming a “blog once a quarter” type of person. Sometimes I feel guilty about that because I genuinely do want to keep everyone updated on Ben. But honestly? I’m tired. Plus, Ben and Madeline have both recently told me that I talk about Ben’s illness way too much. I guess I took that to heart and backed off quite a bit. I mean, I want to be an embarrassing mom in a fun way, not the “holy crap, here comes the lady who can’t shut up about her son’s terminal cancer.”

Since joining social media in 2009, I have fallen in love with learning about your lives. I felt comfortable communicating with anyone and everyone because writing was my preferred mode of corresponding. I didn’t have to sort through my social anxiety in order to interact, which was completely refreshing. And when Ben did relapse that summer of 2009, Facebook got me through the long days at the hospital. I could slip into your world for a couple of minutes… virtually celebrate milestones with you, applaud your kiddo for acing a test, enjoy your life as if I were right beside you… it was a form of sweet relief. Thank you for that. Plus, social media allowed me to cultivate a following of amazing supporters from around the world who have nothing but love for my Ben. So, while you might not want to STAY in our world, you could visit whenever you wanted to.

I’ve received a couple of messages lately from people checking in, worried about us. This is certainly not my intention to cause concern, but the truth is we’re kinda in neuroblastoma purgatory. Each doctor’s visit determines whether we get to hang out in NED heaven or if we’re being thrown back into treatment hell. Right now, nothing is going on. We have a lot of downtime. I wish I could say that we’re doing a lot of productive stuff with that time, but we’re not. Matt goes to work. Maddy goes to school. Ben sometimes works with his teacher. I generally get lost in the sub-world of Pinterest, but sometimes I try out self-tanners. And cry. Of course, I try not to do the self-tanning thing and cry in the same day.

I’ve learned that having something to look forward to takes some of the pressure off the landmines otherwise threatening our environment. For instance, Maddy recently turned 13. She wanted to have a murder mystery party so I myopically dove in… oblivious to everything else in my life. I viewed her birthday party as the pinnacle of my parenting… throw her a great party and I’ll win the “Best Mom EVER!!!” award. I really needed that kind of win. And while I’m confident that the party was a success (she gave it an 11 out of a score of 10,) now I’m back in that sea-ravaged boat asking “What now?” What if I get started on a new project and learn during next week’s scans that radiation didn’t do what we’ve hoped? And then that leads me to just sit here paralyzed… occasionally crying and pinning things on Pinterest that I’ll probably never make. I feel that continuing my search for the perfect self-tanner for my fair complexion is the safest activity for now.

I haven’t completely lost hope, but I’m also not turning a blind eye to what simply is. I know that after my last blog post there was concern that I sounded like I was throwing in the towel and conceding defeat to Ben’s opponent. I’ll admit that it is becoming more and more challenging to accept this bullshit that my son continues to bravely face. I try not to let those cracks show when I’m with him but he knows. He knows. The streaks in my self-tanner leaves no room for doubt.

Everything hinges on what this next set of scans report… I am hopeful.

But I am terrified. And the terror part is getting harder to suppress.

My brain wants to shut down and my body wants to give up. I can’t make them connect right now and despite trying to keep afloat with humor and a “we’ll beat it again!” attitude, I’m concerned that I’m running way too far past empty to keep up this charade.

For those of you who don’t know, Ben has relapsed again. SIX times my son has battled this insidious fucker. I sincerely don’t know how he keeps going. I truly don’t. He continues to be so brave and strong. And while I try to keep a brave face a lot of the time, well, I’m just out of energy. My emotions are completely exposed like raw nerve endings most of the time.

I noticed right before we left for NYC that Ben had turned a picture of himself around to face the wall. This picture showed his wonderful and insightful smile, those deep and knowing eyes, and a completely bald head. He looks that way more often than not but he had reached a point where he was tired of looking at that image. He admitted that he was the one who had turned it to face the wall because he didn’t like looking at himself when he looked like a cancer patient. I honored his request and took it down because I just don’t ever want him to feel unhappy. Besides, we were in the throes of an amazing winning streak against cancer. We felt the vaccine was working and was even scheduling an appointment on getting his port removed when we returned to Denver. THAT was an epic milestone! To not need his port any longer was thrilling to me… and to him. However, we all know now that port removal won’t be happening anytime soon.

This trip to NYC was a regularly scheduled visit. He needed injection #5 of the vaccine and a set of scans. My sister came in to NYC for the day, so we were sitting together on the plastic couch in the waiting room while Ben was undergoing his bone marrow biopsy. I usually stink at having people sit with me during procedures because I seem to be more comfortable in my own head. It’s no news that I’m an introvert and tend to want to handle things on my own, but having her there was really nice. So, when I heard Dr. Kushner talking about Ben Brewer, I turned to wave him over to us. After a brief introduction to my sister, he simply said it: “There’s a new spot.” As that information was trying to penetrate my brain, I worried about how I was getting ready to lose it in front of every person in that waiting room. I kept nodding my head and trying to listen, hoping I was catching what needed to be caught, but everything was buzzing. And I was sincerely worried that I was going to scream right there in the middle of that busy waiting room. After the news was delivered, we were able to go into an office where I did lose it.

Now, I’ve been doing this for a long freaking time. And maybe I should be used to hearing that my son’s cancer has returned. But let me make this very clear: I WILL NEVER BE OK WITH CANCER ATTACKING MY SON. Not the first time, and not the sixth time. And if there’s another time, I won’t like it then either. I understand that I’m “old hat” at this, but it never gets easier. NEVER. And I am offended by people who have said “Oh, it’s just one little spot” which, I shit you not, is what one of the nurses said to me.

Fuck that. ANY cancer attacking my son WILL NEVER BE OK.

NEVER.

So, they gave us a plan right away. And being the compliant person I am, I agreed. Of course, this was all done with Ben’s consent, but my thought was get that cancer out of there NOW. Surgery was scheduled for two days later and a whole extra shit-show of incompetence happened after that. I am not going to go into details here but let me say this: We have officially broken up with Memorial Sloan Kettering for treatment.

This makes me terribly sad. In 2010, Dr Kramer, who was heading up the relapsed neuroblastoma study at MSKCC said the following: “I believe your son is curable.” It was what I had been waiting to hear for years. And, for some idiotic reason, I believed her. I hung a lot of hope on those words. Now, seven years after that initial relapse and giving this institution chance after chance after chance to treat my son with some dignity, since he relapsed on their “Holy Grail” of therapy, there’s no need to continue. It just doesn’t make sense.

On our flight home, Ben leaned into me and said “We travel here to receive CARE. It seems pretty clear to me that they don’t care about me. I’m just a number to them.”

We got home on a Friday night. Ben was coughing quite a lot, which could have been his lung’s way of trying to get stronger post surgery, but since it persisted through the weekend I took him to Denver Children’s Monday morning. We met with Flori, his usual nurse practitioner and SHE HAD NO FUCKING IDEA THAT BEN HAD RELAPSED! She didn’t know that he had surgery over a week ago. She had no information. So I had to explain where it was found. I had to explain the procedures he had just had. I had to explain what the next steps were. I had to call MSKCC to get the records transferred. Of course, I was sobbing throughout the entire ordeal because WHY WOULDN’T THEY HAVE THE COMMON COURTESY TO LET HIS HOME HOSPITAL KNOW WHAT WAS GOING ON????

Dr. Macy came in to talk with us and was very frank. She asked why we would return to receive a therapy that didn’t work. And given all the stuff that went wrong during that visit, why would we want to keep taking on their inability to offer my son any quality of life.

And that’s what shocked me into understanding. They don’t expect him to have any quality of life. Ben said, “They’re probably just surprised that I’ve lived this long, so they just throw whatever they can at me to see if it works.”

Does Dr. Macy think the cancer will return again? Yes. She expects it to keep popping up here and there for the remainder of his life. And then she threw in the “whac-a-mole” comparison, meaning that whenever it does come back, we’ll hit it with whatever study is available. Keep beating it down whenever it shows its ugly head.

We’ve also learned that the radiation therapy they were planning in NYC was nothing like what the radiologist here in Denver would do. NYC was basically going to throw five big doses at him, where Denver said it would be safer to do a lower dose over 12-20 visits. Glad they forced us to get a second opinion.

I don’t know what’s going on there. And if they do eventually find the golden ticket that cures neuroblastoma for good, then Ben will be able to receive it. They can’t deny him treatment just because I’ve called them on their incompetence. But I have to say that I am highly distressed. It’s taken me almost two weeks to be able to say anything at all. I’m feeling very defeated for a variety of reasons.

I’m sad that this “lifeline” didn’t pan out and did more holding us under water than trying to keep us afloat. I  cannot say this has been everyone’s experience, and I’m sure there are plenty out there who are extremely satisfied with their experience at this institution.

Good for them.

But, for now, we’re going to navigate treatment here in Denver.

We’re home.

Despite all the hard work I’m doing on changing my perspective, there are days here and there where I just crumble like a delicate butter cookie under the weight of an 18-wheeler wearing snow chains. Yesterday was one of those days, so today I’m sporting what I’ve dubbed a “sad hangover.” I’m all achy and fuzzy brained, low on energy and carrying around an impending sense of doom like it’s a glorious fashion accessory.

I never did learn to accessorize properly.

Now, the new, “kick-ass” me would try to slough this off as soon as possible, turn on my inner light and inspire all of you out there to keep on trucking despite the circumstances. Today, however, I’m on slo-mo through a big bowl of coagulated oatmeal that someone left on the counter with the hope that somebody else will clean it up.

Ben noticed immediately that one of my Christmas bulbs was burned out, which was causing all the other bulbs to underachieve. I was sitting on the couch owning my sadness when Ben leaned over and gave me a big recharge on my batteries. He hugged me hard, looked deep into my eyes and started singing the chorus from a wonderful song from the Broadway musical “The Book of Mormon” called “Turn it Off.” Now, I’m going to post a link to a YouTube video of this snappy little tune, but I must insist that you only watch if you have a heightened sense of humor and appreciate making a complete mockery of difficult life events. Oh, what am I saying? Y’all read my blog… I think you’re on board with how I roll. If you choose not to watch the video (which is my official recommendation) basically all the song is saying is to bury any and all uncomfortable feelings and go on with your day. It goes against everything I’ve been so diligently working on, but him singing that song to me made me laugh. And that’s what I so desperately needed.

Warning: Highly inappropriate and completely offensive content follows. Enjoy.

And there’s freaking TAP DANCING! We all know how well I respond to tap dancing.

What’s got Sarah so blue and in need of “turning off” her emotions? Well, Ben had an appointment with the endocrinology department at Children’s yesterday. If you’re not familiar, or simply don’t remember basic biology, your endocrine system is made up of glands that produce and secrete hormones. These hormones regulate the body’s growth, metabolism, and sexual development. Now, I am well aware of what Ben’s doctors told me when he was first diagnosed in 2004… with the amount of therapy Ben will endure, he will most likely be sterile. He was two years old at the time, so I gently rolled up this tidbit of information and pushed it deep down into a box of things I don’t want to think about, and there it stayed until yesterday.

At age 15 1/2, Ben is 4’11” (or 59 inches) and weighs 72 pounds. Here’s a chart of what’s typical for boys:

I know, it’s been a while. I decided to take some time off to work on myself. The beautiful thing is that it coincided with Neuroblastoma giving Ben a pretty big break so I’ve had some extra time.

As you may remember, I’ve been working on obtaining my yoga therapy certification. I started the final phase of this journey this past June and have been gently unfolding ever since. I guess it’s been my version of Elizabeth Gilbert’s bestseller, “Eat, Pray, Love: One Woman’s Search for Everything.” And while I haven’t found everything, I’ve certainly learned a lot about who I am. Earth shattering things. Well, at least they’re earth shattering to me.

I didn’t realize how terrified I was to simply be “seen.” I’ve always been one to hide. Hide from friends. Hide from family. Hide from daily life. The further I could sink into a background, the safer I felt. It wasn’t fun there, but at least I felt safe. It begged the question: Why is “safe” so important to me? The past thirteen years of my life has been fraught with unsafe things… the constant thought of potentially losing of my son, the uncertainty of love relationships, tremendous amounts of loss, feeling the distance between myself and people I hold dear in my heart… always blaming myself for being “weird” or “quirky” and expecting – no, demanding – for people to not take me very seriously. A sense of humor is much easier to deal with than feeling vulnerable and unsafe. And if I ever let any of that vulnerability seep out, I had to quickly cover it with something to make YOU more comfortable. Meanwhile, it did absolutely nothing for my mental health.

I craved a safety that I couldn’t even create with every defense mechanism that I had in my bag of tricks. So I decided to change course and take a look at perspective. Now, THAT was something I had control over. I could look at something from any point of view that I wanted – even the crappy stuff in my life. And I’m learning to continuously search out the good in every situation and discard what serves no reasonable purpose.

So, I’ve sat back and have watched what’s been happening over the last few months. There’s no lack of hate out there… this latest election showed the hideous side of many people, spewing anger about the horrors that will happen if either side won. It’s been exhausting.  I rarely share my political views because I don’t think of myself as being especially politically astute. And I’m really of the mindset that my vote doesn’t count. I DID vote, but I’m pretty sure my ballot is still sitting somewhere in Aurora unopened. I don’t have faith that the political system is on the same spiritual awakening journey that I’m currently navigating. It all feels so out of control and while I used “my voice” to vote, I’m not confident that anyone’s voice was truly heard. Honestly, though, it’s been so hard to hear anything at all over all this hatred. I’m very concerned about our future as a country, especially if we can’t even simply be kind to one another. I’m planning to use what voice I’m developing to spread love and kindness. Any other way just doesn’t make sense. And any other way just doesn’t seem to matter.

The biggest “a-ha” piece that I’ve learned so far has been the fact that I am not defined by anyone else’s thoughts. YOU are defined by your thoughts, but I am only defined by mine. And you are not defined by my thoughts, either! Isn’t that refreshing? For whatever reason, that brought a tremendous amount of comfort to me. It might be that this is a super basic way to look at life, but it makes a lot of sense to me. And I’m choosing to look at it all through a lens of love. Because of this, I feel that my relationships are becoming stronger because I feel stronger. And, I am not constantly worrying about what you think of me. Think what you will. You’re going to anyway!

But know that whoever you are, from my perspective, I think you’re amazing. Despite your faults. Despite what you think of me. Offer the light you have instead of the fear that so often pushes through first.

Love is the answer.

You might have heard that our beloved Yoshi – a completely adorable, yet ridiculously unintelligent dog – died this past April after a run-in with some raspberry flavored IceBreakers sugar-free gum. I had no idea that the Xylitol featured in this sort of gum was toxic to dogs and would most likely result in liver failure – and such is the demise that sweet Yoshi met after eating an entire container of the stuff. It broke my heart to hold my sweet doggy in my arms as he peacefully drifted off to his Rainbow Bridge or Valhalla or wherever less-intelligent dogs may go when their earthly life ends. And I thought to myself that I would never be ready for another dog. Ever. He was just that awesome.

So, three weeks later as we were walking into PetCo to get food for the other members of the pet squad, we had to pass by a long line of cages holding adorable foster puppies looking for their forever home. I lowered my gaze so I wouldn’t have to make eye contact with their big brown puppy eyes, knowing that some other sucker would come along shortly to offer them a loving environment. As I was putting my hand up to the side of my face to act as a blinder to save me from their terminal cuteness, I heard someone call out my name. It was my wonderful yoga friend, Becky, and damn if she wasn’t holding one of these adorable puppies. She had been fostering puppies for an out-of-state rescue group and was very effective at her job. She twisted my arm and MADE me hold a puppy.

I want the record to show that it was completely against my will.

Needless to say, an hour later, we had a new dog. Ben decided on the name “Cody,” after our favorite NHL player, Cody McLeod. Puppy Cody is sooooo cute and has a shocking number of similarities to our dearly departed Yoshi, including his lack of intelligence.

Spring morphed into summer. Cody worked diligently on things like finding corners to pee in, torturing his chihuahua companion who wanted absolutely nothing to do with him, and taking over Yoshi’s former pastime of trying to mount the cats – cats that were still in possession of their claws. Despite their attempts to dig his eyes out, Cody never quite got the hint. He proudly displayed his lack of intelligence, just like Yoshi did.

So when it came time for me to pick the kids up from Camp Wapiyapi, (www.wapiyapi.org – look it up, it’s AMAZING!) my heart sunk a little because it was tradition for me to take Yoshi along for the ride. He LOVED car rides, especially when it resulted in reuniting with his favorite Ben and Madeline after a week’s absence. The camp the kiddos go to is in Estes Park, about two hours from Denver. I quickly remembered that we had a new puppy who would probably LOVE to take a car ride with me! I loaded him up in the front seat with a blanket to sit on and off we went.

About 10 miles into the trip, I got on the interstate. Up until that time, Cody had been content sitting shotgun, but once we hit the highway, it became a different story. I’m not sure if he was freaked out by the sound of the road or what, but he started whining. I tried to soothe him with loving scratches behind the ears and lulling him with my lowered voice with words like “it’s ok, puppy. Just relax, Cody.” but he wasn’t having it. He crawled up between the headrest and my neck, desperately searching for safety. He sat there for a couple of minutes, incessantly making the most pitiful noise I’ve ever heard.

And that’s when the drooling started.

Within moments, the back of my neck, my shoulder and arm were covered with puppy drool. For those of you who know me, you know I can handle blood. I can even handle poop. But the one reason I could absolutely positively NEVER EVER be a nurse is because I. cannot. handle. vomit/bile/drool. And I have a very sensitive gag reflex when it comes to such things. So, as I looked like a cat trying desperately to dislodge a hairball from my throat with a dog stuck behind my neck drooling all over me, I knew it was time to pull over. I moved Cody back to his blanket. I regained composure and considered turning around to take Cody back home, but knew that would be too time consuming. I had to pick up the kids by a certain time, turning back now would make me incredibly late.

We got back on the road. The whining picked up where he had left off and the drooling increased. I patted the top of his head, trying to soothe him but also trying like crazy to avoid the drool. It went on like that for miles. He would lift his cute little puppy head off the blanket only to leave a disgusting line of drool hanging from his mouth. It was repugnant. Shuddering with disgust and trying hard to not puke, I pulled off the highway and onto the mountain road that leads to the camp. For a few moments, Cody relaxed. He stopped whining. I thought that it was, indeed, the noise of the interstate that had him so worked up. Whew. Safe at last.

As I was mentally mapping out a route home that would avoid all highways, I had to veer into the oncoming lane to avoid a bicyclist. I’m all for exercising but I believe the act of bicycling up a mountain road at seven in the morning is a bit show-off-y. Of course, as I passed the mid-line of the road, the rumble strips meant to alert you as you’re steering off course scared the ever-loving hooey out of Cody. He howled as we crossed over the line, again and again, as the amount of crazy bicyclists increased as we traveled further into the mountains.

I apologized repeatedly as we passed yet another bicyclist. And another. And another… “I’m sorry, I’m sorry puppy, I’m so sorry,” I placated as he continued to howl and drool each time we passed over the rumble strip. He constantly changed positions. At one point, he was upside down with his head hanging backwards over the seat. It reminded me of this one time in college – after experiencing what one bar called “bucket night” – the evil effects that alcohol could have on a fresh-faced kid like me. Maybe if I lay down with one leg up in the air, I won’t feel nauseous? Or if I hold on to the chair rail, the room won’t spin as fast? Please, baby Jesus, please let this pass. I will never drink again. Ever. I imagined this was what Cody was doing as he continued to drool and howl at the inhumanity of it all.

After two hours of his howling and drooling, we arrived at the beautiful location nestled in the mountains. Cody leapt out of the vehicle and ran towards the first person he saw, probably thinking that someone would save him from the insanity he just endured. The moment the kids at camp saw him, the Oooohs and Aaaaahs started… “Ohhhh! what a cute puppy,” and “Can I pet him?” until he got near them and they discovered that he was soaked from all the drool. The ooohs and aaaahs quickly turned to ew, gross, as a completely gooey dog tried desperately to jump into someone else’s arms.

We said our goodbyes and loaded back into the vehicle, Ben and Mad snuggled Cody between them on a new, less drooly, blanket. I think he passed out from the stress of it all since he didn’t make a peep the entire way home.

And he hasn’t been on a road trip since. I don’t think he ever will again.

Moral of the story: Don’t be a showoff and ride your bike in the mountains. Just kidding. However, do make sure your dog can handle the car before taking him for a four hour ride. I’m sure my car will never recover from all the drool. And neither will I.

My dear, darling Sister,

Today is going to be very difficult. Attending Anthony’s graduation without his being there has to be another knife in your weary heart. I’m sorry I’m not there to celebrate his achievement and hold your hand as this milestone he worked so hard for passes you by without him in attendance.

I’m so sorry. I’m trying really hard to find the words but I’m struggling. I always have words. Something to make you laugh, something to bring a bit of levity. Comfort. Anything to take the sting of this immeasurable pain away. Words have always been my friends, but not now. I have nothing that will make this better. The loss of your sweet, tender-hearted son is something that leaves me utterly speechless.

I’ve started several different posts about Anthony since he left us in April. I want the world to know how special he was. I want them all to know about the comfort he brought to my son during so many years of ridiculous therapy. How many times has your family dropped everything to come to our side when Ben was ailing? Countless. Your thoughts and prayers and support have been a beacon for me over the past 12 years of Ben’s illness. Anthony was one of Ben’s very best friends. We all know that Ben is pretty good at being alone, but the relationship that he and Anthony shared was… magical. 

You raised a good boy, Sissy. You did a good job. You loved him, cared for him, supported him, encouraged him… all the things a loving parent should do. I know he didn’t doubt that. What he did doubt was himself. And that’s something you did not have the power to change. When someone has in their mind that they aren’t worth it, it’s hard to turn that around. It’s something that needs to be learned on their own. Unfortunately, he didn’t give himself enough time.

When I was Anthony’s age, I could only hear the negative. Words came into my brain and filtered through my crappy self-image, unable to refine into anything fortifying. While I’ve learned a lot over my 47 years and have decided that I’m ultimately not worthless, it was a very difficult battle. Some of us are just wired that way. It’s not anything any amount of parenting or therapy can change. It has to be done from within. I recognized some of the same traits in Anthony, and even addressed them in a letter I wrote him two years ago for his sixteenth birthday. We were a lot alike in many ways, using our humor to cover up how bad we were hurting, retreating when things got too tough, beating ourselves up for every damn thing, whether we had anything to do with it or not. We had the same affliction of simply feeling too much and not knowing how to handle it.

I don’t know everything, Sissy, but I know this: You were the perfect parent to suit his needs. You did your job well. Knowing that you always wanted to be a mom, there was no question that you’d excel at your job. Gabriella and Anthony were blessed to have you as their mother. You provided them with the best and most important thing a mother could give – your heart. They never lost sight of that.

I also happen to know a thing or two about low self-worth and how damaging overwhelming depression can be. It doesn’t matter what anyone says, if you don’t believe it, you won’t hear it. Anthony was such an empathetic young man and picked up on everyone’s emotions. His first thought after meeting someone was, “I wonder if they liked me?” Because he’s painfully aware of people’s thoughts and feelings, even to eventually go to the extreme of forsaking his own thoughts and feelings in order to honor someone he cared about more than his own. Anthony didn’t understand his value. He didn’t give himself enough time to realize how precious he was. I’m so sorry for that.

I can’t imagine what you wake up to each morning and the heaviness you fall fitfully asleep with at night. I’ve tried to imagine it. I sincerely have. I’ve been preparing myself for my son’s death for 12 bleeping years. I know you can’t really prepare for something like that, but every day I think about the possibility of losing Ben. And how heart wrenching that would be. And how I wouldn’t want to go on. And that waking up to face another day without him would be the worst chore I could ever complete.

I guess what I’m trying to do here is bring you a tiny bit of comfort that you are an amazing mother. Your son is and will always be important to us. He added a lot to our lives, especially Benjamin’s life. I’m sad that many people didn’t get to know how wonderful he was and how dearly he will be missed.

And when they call his name at graduation today, smile knowing how happy he’d be to have completed this milestone. Celebrate it. Grieve it. Allow yourself to feel today, whatever those feelings might be. And know I’m here for you… to laugh with, to cry with, to celebrate and mourn with… I’m your girl.

I love you deeply. Always have, always will.

Love,

RaRa

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.

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. ❤

And I hope I never rearranged your lawn ornaments.