Expired

I took great care in cleaning out the refrigerator on Saturday. You know, removing drawers, wiping down surfaces and wrangling the fragments of dehydrated carrot that always seems to find its way to the weirdest place in the fridge. Honestly, I kinda identify with this carrot. I don’t usually belong where I am but I find a way to survive in most environments. And I’m probably fairly dehydrated.

Regardless, I clean the fridge once a year whether it needs it or not. There were a couple of things in there that I couldn’t quite figure out but nothing absolutely disgusting. I took each item out, looked at the date, and decided whether or not it could continue to live in its temperature controlled environment where it was randomly awakened by some jackass turning on the light every couple of hours. Actually, I’m starting to commiserate with my fellow refrigerated items. My memories of living in the hospital are much like living in the refrigerator. It’s always 40-freaking-degrees and someone is always waking you up just when you’ve fallen asleep. Each and every person who steps inside is a light invading your space, looking for something to do at 3 am and deciding to quell their dissatisfaction with a snack. Can you just do what you need to do and turn off the light already? People (and refrigerated items) are trying to sleep here.

Anyway, amongst the myriad of random jars – think maraschino cherries and hot pepper rings – the top shelf of the left side door holds a single can of Coke. Everyone living in the house knows about this can of Coke and that it is special. It was acquired by Ben during one of his last hospital stays and for whatever reason, we kept it. We all know not to drink Ben’s Coke. But as I was cleaning off the next shelf, I came across a few yogurts that were truly past their prime. They were Ben’s. Near the end of his battle, the kid just couldn’t eat. The small, drinkable yogurts were one of the only things he could tolerate. Finding those took me down a rabbit hole of “Oh MY GOD a MEMORY OF BEN! To “oh my god this hurts a ridiculous amount.” The emotions threatening to break free from me like an avalanche roaring down a mountain, taking my broken heart with it. I know. I’m a drama queen. I accept that about me.

So, the yogurt. They were tiny bottles that looked absolutely adorable all lined up in a row waiting for my son, who would not be coming back to drink them.

He won’t be back to drink them. Let them go. No.

My mind sighed as I lined all the little bottles up, displaying them like they were a precious keepsake in the refrigerator of life. They were useless, but I could come back and dust them and stare at them and lament that Ben wouldn’t be drinking them and cry and laugh and scream… the yogurts served a purpose in my mind and I just wasn’t ready to let go. I thought I’d like the idea of opening up the refrigerator, seeing his can of Coke and his yogurts. For the rest of the day when I opened up the fridge, the gleaming light wowed me every time it revealed the organized contents of my refrigerator, especially those little bottles of drinkable yogurt.

The next morning, I found my daughter on the couch. She had been up all night throwing up like a freshman at a keg party. I sat next to her and rubbed her back as she tried to recover from whatever was ailing her. I asked her what was going on and she illuminated the fact that the super clean refrigerator had this amazing display of tiny drinkable yogurts. And she drank a couple of them.

As she was telling me about what had happened, I instantly felt sick. Not because Ben’s yogurts were gone, but because I chose to hold on to something that I knew had no true value, it just made my heart respond in a way I wanted it to. And that decision made my daughter violently ill.

The lesson I learned is that grief is simply love with no place to go. I can try to make shrines out of everything that Ben ever touched, and sometimes I DO do that to a certain degree. But as I’m learning to let some things go, I try hard to remember that this doesn’t mean I’m forgetting about or dishonoring Ben in any way. I’m simply letting go of the things that have expired and have no true use in our world. Something that brought me a tiny bit of comfort made my daughter so incredibly sick. Grief will never expire. Love will certainly never expire. And the love I shared with Ben is worthy of saving and displaying. Thankfully, that doesn’t have an expiration date.

The Danimals, however, have left the building.

road trip

Ben and I spent a significant amount of time traveling together, getting from point a to point b for some sort of treatment for most of his life. Sometimes that trip was a couple of miles from home, sometimes it was across the country. He generally sat to my right and I’m just now getting to the point in the grief journey where my muscle memory is allowing me to finally accept that, this time, when I look to my right, he will not be there. The dryness in my throat doesn’t automatically take over and my body doesn’t feel like it’s drowning under the avalanche of adrenaline I’ve become accustomed to since Ben died. I’m trying to welcome each phase of this bittersweet journey without feeling the agony of defeat in every cell of my body, but man. This is some overwhelming stuff. I miss my traveling companion, but even missing him has started to feel routine. The shock has quelled to a dull, incessant ache.

That first road trip we took without him was quiet: the road from the Hospice Center to the house. A night of firsts: I didn’t have to remind you to take your meds or brush your teeth. Didn’t need to ask if you wanted or needed anything. Did not get to kiss you goodnight in your room and this time when I woke up in the middle of the night it wasn’t going to be to hover over your wounded body while you fitfully slept or to rescue you with morphine when the pain was too intense. But tonight was the first night in a long time that I didn’t have to be on alert. I naively expected a bit of comfort to come when I was relieved of that duty, but quite the opposite happened. I lost my job. And I freaking loved my job! Yes, yes, I hear you that he is no longer in pain. He does not have to hear another host ask if he needs crayons with his kids menu. He doesn’t have to be sick or sedated or radiated or any of those things any longer. Cancer beat him up. Tortured him. Held him hostage nearly his entire life. And while I understand the concept of “at least he’s no longer suffering,” I’m struggling with finding comfort in that. I’m not glad we don’t have to go to the hospital every day. I’m not happy that I can’t hear his laughter through the wall. I miss his smart-ass comments. I miss his kind and gentle heart. I just miss him so much. And now that the numbness is starting to dissipate, I’m left with a searing agony.

Well, duh. He was an extraordinary young man. A loss of that magnitude is going to hurt for the rest of our lives. But we’re trying. We’re getting back into our caravan of living despite missing a key member of our group. And some of these towns that we visit along the way are going to break our hearts. We can take the outer belt around some of them if we’re not ready. But every town, every road, has to be visited eventually. There will be road blocks but you’ll figure out another way. There will be construction that prevents you from moving further, so stay put and learn to breathe through the inactivity. Ignore idiots with road rage because they’re mad at something else, not you. Heck, maybe they’re going through the same thing you are but haven’t yet traveled to the place where they learn to forgive themselves. I kinda need to revisit that town myself. I might need to take up residence there for a while.

It’s a journey. Some roads need to be repaved. Some exits offer no respite. Many of the diners have gone out of business. But keep your eyes open because sometimes the cheesy roadside attractions are worth the stop.  It undoubtedly hurts, but I’m learning it’s better than simply driving by all of these moments in life. There’s so much more to the journey. Even in the devastating face of loss, there’s just so much more if you allow it.

And if you’re not ready to fuel up at this exit, you can come back another time. Trust yourself. This is a horrible, beautiful, ridiculously painful, yet full of love journey.

I’m going to allow myself to feel every bit of that.

sorting through thoughts

If I stay quiet enough, I can hear the clanging of the mini rectangle of plastic against metal –  a mini Nintendo game you never got a chance to play. It was hanging from your desk lamp and positioned right by your bed for when you woke up and saw that it had finally arrived for you. We knew you’d want to play it ASAP.

Please, Ben. Wake up. It’s here for you.

But the sleeping was outweighing the waking. Unfortunately, the sleeping wasn’t very restful. Apparently, that’s common near the end of one’s life, restlessness. You rocked yourself a lot of the time as a way to self-soothe… a way to get through. With each gentle rock, the piece of plastic clanged against the metal lamp shade. The sound almost became hypnotic. And I shouldn’t say clang. It was more of a chime. A soft noise. Chime… chime… chime… in perfect time as if it was purposefully matching the beat of a metronome. It probably isn’t what most people would consider communication, but my son was making that noise by himself. It was his contribution to our vigil that we were holding for him.

It broke my heart how you responded to nurse Lauren’s visit. It was probably the one that had you the most concerned; why was she at our house? Why was everyone whispering? You said out loud at one point, “It must be bad if all of you are in my room.” Then there was a sweet hallucination (what an oxymoron!) when Lauren was getting ready to leave… you automatically lifted the bottom of your shirt so Lauren could de-access you from your IV. Oh God. My heart screamed. This had been your normal for so long, it was an automatic response. You were drifting between the world of being here and leaving. My logic allowed me to say the words out loud, “Ben, you have my permission to let go.” whereas my heart was screaming “NOOOO” louder than an air horn.

That’s how it feels most days, like every single pore of my skin has its own air horn behind it and if I accidentally brush up against anything, they go off. I think most of them are just waiting to go off all at once despite my desired efforts to seem “normal.” Today, I had a close call at Michael’s. A woman was buying a wooden clipper ship, one of those items you paint yourself – and I could immediately hear The Legend of Zelda Wind Waker soundtrack running through my mind with the ship floating out to sea, which generally brings me so much comfort because of how special it was to you. But I was outside of my safety zone. In public. The air horns can’t go off here. But the threat was at a very high level: Red or Orange or Five… whatever is close to “we’ve got a middle-aged woman in aisle five doing some weird shit that needs to stop STAT.”

So I made it home before some of those air horns went off. And now I’m sitting here, hurting, wanting, wishing, waiting. And, yes. Sometimes I go in your room and try to replicate that gentle sound you left me with.

But my rhythm is way off.

Processing…

I was laying next to Ben’s body, gently embracing him, when Maddy rushed in to room 115 of the hospice facility, absolutely shattered to find that her brother had died and that she hadn’t been there. Her face twisted in pain with tears flowing and words choking out “I’m sorry! I’m sorry! I’m sorry I wasn’t here!” I wanted to take her in my arms but I was afraid to let go of what I currently had my arms around, because when that happened, it was going to be permanent.

I know I can’t make her understand now, but watching Ben die was incredibly painful. Those last few gasps. The raspiness of the congestion in his throat from those damn mouth sores. The oozing blood on his pillow. Watching his beautiful brown eyes fix into a stare that I cannot help but compare to a factory reset. His eyes rolled, then stopped right in the middle as the last breath left him. Like he had been reset. He was no longer breathing. No longer moving. No longer living.

And there was not a freaking thing I could do about it.

But I was glad that she was out of the room when Ben left. Matt was there to hold her close as her sobs grew louder.  I continued to lay next to my dead son, gently touching his quickly cooling skin and counting the freckles that I had counted a bazillion times before, trying to commit them to memory, because I knew at some point, they would take him away.

I don’t know how long we were with him, but they gave us all the time we wanted. We kissed him, held his hands, smoothed his hair. Knowing this was going to happen. In denial that this just happened. How are we going to carry on now that this has happened? 

We finally told the nurses we were as ready as we were ever going to be to leave our Ben. They asked us to step out of the room so they could prepare Ben’s body for the funeral home to come collect him. We waited in the lobby by the nurses station. I knew they were changing him into a Nintendo shirt and some comfortable pants that Matt had picked out, but the only other thing I can remember is that my body was trembling. The adrenaline was making it too difficult to stand still but too challenging to move with any grace. People said things. I don’t remember. My eyes were glued to the door of 115, waiting for the stretcher to come out with my son’s body.

When the door finally opened, it did simply look like he was sleeping, but with each wispy fluff of the newly growing hair smoothed down like a little old man getting ready for a date. I couldn’t step closer to the stretcher. None of us did. We just looked at him from where we were standing. Like he was asleep and we didn’t want to disturb him. They were just taking him off for a little rest. At least, that’s how my coping mechanisms allowed me to process this.

The woman who came from the funeral home to collect Ben had him covered with probably what was standard funeral fare, but it looked out of place on Ben. It was a very heavy formal looking blanket, but it was easier to focus on that out-of-place blanket than it was to make my mind accept that my son’s body was beneath it. It was all so out of place. She started to gently wrap Ben’s face up in the sheet while we were all gazing at him and the hospice nurses all gave a collective head shake of “NO!” She quickly removed the sheet with a slight look of embarrassment that she had done something wrong.

Something touched my heart though, that this must be her first collection of a body, at least with family watching. And that soothed me somehow. This was my first time going through this, too. I’m not quite sure how to do this correctly either.

I think learning how to do this is going to be a life-long process.

 

 

 

New York City

I started writing this last month on 9/11 but lost my energy… sorry if it feels disjointed.

Seventeen years ago today, I was relishing the tail-end of my maternity leave when terrorists attacked America. I was laying in bed gazing adoringly at my three-month-old son when a phone call from Matt encouraged me to turn on the tv… he said a plane had just hit a building in New York City.

I scooped up Ben and walked into the living room only to tune in just as United Flight 175 crashed into the South Tower of the World Trade Center. I had missed the few moments where the Nation was discussing whether or not this was an accident. This second crash made it clear that this was a deliberate act of aggression. Reports of destruction and death and hate and heartbreak… it was surreal.

In the weeks following 9/11, I felt a true camaraderie with my Fellow Americans. I nodded at strangers with concern in my eyes, as if to say, “I know, Pal. This is some scary shit.” After about a month of feeling extra patriotic, I went back to my old patterns: An older woman at Target approached me as I was taking Ben out of his car seat and transferring him to my hip. She said “Oh, what a beautiful baby,” and then started in about his red hair, which oddly led her to start talking about the horrific state of the world we lived in. As she reached out to touch my precious Ben (which caused every cell in my body to seize – just don’t touch my stuff – especially my humans – without asking) she said, “You sure did pick a crappy time to bring a kid into the world.” My response was to furrow my brow with a look of “piss off, woman” and pivot away from her creepy fingers to deny her any contact with my son. I have to admit, though, my paranoia does chide me at times. Is 9/11 my fault? Did Ben get cancer because I chose to bring him into the world during a crappy time? Of course, I logically know that neither of these things are true, I just have an overly active imagination and a fair amount of self-deprecating humor.

In 2010, we started traveling monthly to NYC for Ben’s therapy. I will never forget stepping off the plane at LaGuardia and having no flipping idea how anything worked. I’m from Kirkersville, Ohio, where the population is somewhere around 500. There’s definitely more chickens than humans. And from what I could count, about 500 people were also waiting for a taxi with me at that very same moment. And they all kind of smelled like chickens. It was overwhelming to say the least. Ben nestled against my coat and said, “I don’t think I like it here.” I had to agree with him.

Over the years, we travelled to NYC often and for a variety of therapies. Memorial Sloan Kettering really did have the best options for relapsed Neuroblastoma then, and while a lot of that therapy was painful and left Ben unable to walk or nauseous or whatever side effect he experienced from trying to save his life… we tried hard to make the best of it. However, I’m the kind of kid that likes to “go it alone,” I won’t ask for help in the traditional sense. Our routine consisted of heading into the city, checking into the Ronald, and then pretty much avoid other people during our stay. Introverts. What can you do? Any navigation of the city was done completely on our own, with the exception of a side trip to the Jersey Shore with the Ronald McDonald House and a gala or two.

So I didn’t know about this wonderful woman named Barbara until really late in our NYC travels. Barbara runs a non-profit called Candlelighters NYC but I really had no use for groups and other people to commiserate with… I’m a DIY kind of girl when it comes to dealing with emotional stuff. Regardless, I kept hearing about Barbara and how she knew everyone and gave the kids amazing experiences.

So, years into our trips to New York City, I finally meet Barbara. She sent me and Ben to a hockey game where we met New York Islander Josh Bailey. The day after this meeting, we learned that Ben had relapsed. Barbara came to the rescue with stuff for the unexpected hospital stay and unending support. This trip, though, ended up being one of the more stressful trips we had to Sloan Kettering, as it was longer than we anticipated and we decided after this relapse to no longer pursue treatment in New York City.

The hospital here in Denver did not make any illusions about Ben’s prognosis, and even though they couldn’t predict when his death would happen, they were clear that we needed to get busy living. I think we all shut down about that. March was absolutely horrible but then we got a bit of a reprieve with that new chemo that was only supposed to help keep him comfortable. He suddenly had energy. He was playing with his online friends again. We were making our way through the cinematic Marvel Universe together. It was a cleansing breath for all of us.

But I heard what Denver was saying, that this was not going to get better. In fact, Dr. Macy said “I don’t know if it will be this week or next week, but it will be soon.”

Soon.

Soon.

Soon.

With a little more urgency, I asked however you ask a 16-year-old boy what he wants to do before his life ends. Ben surprisingly said he wanted to go to NYC so he could meet his online buddy, Branden. I called Barbara to ask if she knew of any lodging options in the city and before I knew it, Barbara and her beautiful friend, Ann, had set up flights, transportation, gorgeous lodging, stocked refrigerator, an amazing boat ride on FDNY 343 and a Broadway miracle of not only fantastic seats to Hamilton, but also the chance to go backstage and meet the cast. Ben was on morphine for this experience… when we first sat down so incredibly close to the front he said, “this dying gig isn’t so bad.” And then he immediately said he was sorry if that hurt my feelings.

Seriously. How will I live without this young man and his sharp wit/amazing empathy?

He was in so much pain though. His birthday, when we took the boat ride, was probably the last day he willingly stood for any length of time on his own. He interacted with the firemen and enjoyed driving the boat. He took pictures. It was clear that he was tired but I never expected that he would be leaving me in just over a week.

We did get him to New Jersey to meet Branden. The look on Ben’s face masked the obvious pain as he was meeting the person most important to him: A friend who had been there through it all and was BRAVE enough to stay even though he was going to lose this friend. For that, I am amazed.

I was so worried that my son didn’t have any true friends. But here he had built this community of wonderful people who didn’t see him as anything but a gamer, one who changed their lives for the better (as they’ve said through gorgeous notes over the past couple of months.) I am so proud of my son. He really did change the world.

I’m just having a terrible time trying to reconcile the pain.

My Darling Ben,

We couldn’t get you comfortable at home. You didn’t have many lucid moments past Sunday morning when the hospice nurse increased your morphine for the fourth day in a row. You started sleeping more.

But what we were doing at home wasn’t enough. It all moved so fast. Your sweet face was so swollen from that horrible bastard of a disease. Relentless fucker. Hadn’t it done enough? No. It was going to make the end miserable, too, by finally showing what it was fully capable of.

A week prior you were meeting your best friend in New Jersey and today you can’t speak to me. And despite a constant increase in pain meds, you’re still experiencing discomfort. We get you through Sunday. We stumble hard through Sunday night. Monday morning we made the decision to move you to the hospice facility.

It was the right thing to do.

Your dad carried you down the stairs and gently placed you on the stretcher. We covered you up to your chin as the EMT’s buckled you in. I went outside with you to the ambulance. The sun was incredibly bright, and your body responded with the appropriate reflex of a wince. A boy walked by on his way to his buddy’s house, curious as to what was happening just a few houses down from his. We locked eyes for a moment and I thought to myself that he probably didn’t even know another boy – my boy – lived in this neighborhood, too. I felt weird about that for a minute and then climbed into the back of the ambulance.

“Talk to him, honey. He can hear you,” the EMT encouraged me as she scribbled on a clipboard. My hands placed on either side of your face, my lips touching your forehead as I whispered and wondered… “can you? Can you hear me?” So I told you a story of how I was pretty sure you would get the job at Rainbow Bridge, greeting all the pets as they arrived. I imagined you responding to me with “You mean I have to get a job in the afterlife? I can’t just “chill out” for a while? And I’ll be pissed if this place doesn’t have WiFi.”

We were at the hospice facility for less than 12 hours. And even though I know what “unresponsive” and “hospice facility” and all those other terrible words mean, I still thought we would somehow come home with you. I know that sounds unreasonable. And, as it turned out, it was totally unreasonable. We left there around midnight. Without you.

I watched you die. In those final moments my eyes were glued to your neck, following your weakening pulse as it slowed… stalled… jumped…. You gasped hard. I think I screamed. I understood immediately and with great clarity the reasoning behind having a DNR because as I was witnessing this, all I could hear was my soul screaming “SOMEBODY PLEASE DO SOMETHING! PLEASE HELP HIM!” I pushed the nurse’s button and they rushed in to be by our side as you died, their hands on my shoulders, knowing what was coming next.

One more labored, gritty breath and then you were gone. Maddy was, thankfully, out of the room when you died. I kinda think you planned it that way… you knew that she needed mercy on this. I know she thinks she failed you because she wasn’t there. If you could do something to alleviate her grief over that, I’d appreciate it.

Also, while we’re asking for favors, know I’m listening for you at every turn and missing you desperately. Your once quiet presence has turned into an excruciatingly loud void. How can you be everywhere and, yet, nowhere? It is absolutely confounding.

This sucks, Ben. I miss you, my darling, and I love you so very much.

Love,

Mom

 

 

 

 

 

I’ve been crouched down on my knees for so long that I can’t remember if I was looking for something or praying. Maybe it was a little of both. But my knees are bleeding from being down here so long, and, since I am days away from turning 50, I’m willing to accept the fact that it’s getting more difficult to get back up again.

Dammit. Please come out. Please allow me to express all of these horribly horrific experiences that are holding my brain hostage. I’m tired of having them in my head… a screenplay for the tragedy that is relentlessly playing out, whipping into a frenzy that I pray will stop but am afraid will stop. I can’t even begin to edit all the footage so it will make any sense and the maudlin soundtrack refuses to modulate to a different key, which I just know would melodically pull us out of this quagmire of defeat.

Ben is in decline. I cannot make my mind conjure up an image other than me standing on a parapet waving a white flag, conceding defeat. Only it’s not my flag to raise. So I rewind the footage in order to erase that it looks like I’m trying to tell him what to do, even though I don’t want him to do that. I’m just tired of seeing him hurt. And I’m sure he’s tired of hurting. He’s got to be so tired.

So tired.

The kicking is getting slower and the urgency of survival is giving in to the promise of rest. Each push of his patient-controlled morphine allows him to exist in this state of in-between… giving us time to love and grieve and all the terrifyingly beautiful things most people would probably rather avoid.

It’s just shocking how much it hurts.

 

 

 

 

breathtaking

During the summer of 2000 I found myself on the island of Grand Cayman taking a two-week certification course for scuba diving. I was 30 years old and “highly” stressed out. Oh, my life was full of woe back then, for I had just completed my MBA at the University of Denver and had to leave my beloved Summit County, Colorado (where it is extremely difficult to earn a salary strong enough to pay off an MBA) for my former home of Central Ohio. Yes, I moved back home. With my parents. And as I stated above, I was 30.

To my credit, however, I picked up the adulting gig pretty quickly. Within a year I was an HR manager making a respectable salary, got a spouse, a baby, a reasonably priced starter home in the suburbs… all within a year. It certainly wasn’t the vision I had for myself when I was in Grand Cayman “recovering” from my life as a student in a ski town, but I was making it work. And despite never wanting to be anywhere near infants/toddlers/anything-that’s-sticky, I found motherhood to be quite compelling. I was completely captivated by these little nuggets of joy.

So what, Sarah? We’ve all heard this story before. We know you’re sad because you never thought you could love someone like you love your children and how cruel this life has been because you have to sit and watch them hurt knowing there’s not a thing you can do for either one of them. We know.

I know. I’m just making conversation because I think I’ve forgotten how to do it. I see people in public and words form in my brain but my mouth can’t process it so I say a word like “moop” and realize how ridiculous it sounds and burst into tears. At Safeway. Or the bank. Or in the kitchen. Anywhere, really. I never know when it’s going to come.

It feels like we were introduced to this hospice team a million years ago. It’s amazing how quickly they become a part of the family, like they’ve been around forever and know every intimate detail of your dirty life. But they aren’t there to expose it. They aren’t involved because they’re nosy. They aren’t in it for the juicy gossip. They’re in it because it’s the end of someone’s life and someone has to be there to do it with grace. That’s not me at this point. I’m not doing this with grace. I can’t fucking stand this. But I want to soak in every minute because that’s all there is.

That’s all there is.

And why I was remembering my unpaid sabbatical in Grand Cayman was because it taught me something vital: how to breathe. And, God, isn’t that trite… just breathe, dear Sarah, just breathe. But dammit if it doesn’t work. Breathing works. It keeps us alive. And for the times that our body is too overwhelmed to do it on its own, you die for a second and then remember why you’re here… to keep breathing another day. At least until you’re out of breath.

I learned underwater that when you find the perfect balance, as you inhale, you rise. When you exhale, you sink. Of course, this life is so out of balance there’s a lot of kicking and flailing about, but bringing your mind back to the breath will eventually bring you through. Move forward through the water. Inhale; rise. Exhale; sink. A pattern with momentum and that much control will have you flitting through life like a mermaid. If only I could find a pattern.

I’m quietly watching as my son’s breath runs out. And that is excruciating. Some days I don’t want to. Then I remember that this is my flipping journey and I’m not going to miss a moment of it. If I’m supposed to sit by my son’s side as he slips off this mortal coil, then I’m in 1000%. I will breathe through it. Just like I breathed through his birth, I will breathe through piece of the journey, too.

When the nurse on-call tells you it’s time to open the “comfort kit” you’ve stored in the refrigerator for when things take a turn for the worse, just breathe.

When they suggest buying very dark sheets so you won’t be shocked by the amount of blood loss, just breathe.

When he finally asks for a tiny bit of comfort and lays his head on your shoulder just like he did when he was a toddler, just breathe.

End of life is still a part of life, friends. And even though the breathing gets more difficult, we’re still alive.

Keep breathing.

Brain Dump

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.

 

 

 

 

Checking in…

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.