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.