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.”
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.
I continue to think of Ben and enjoy the pictures that you post of your beautiful son. Although I never had the privilege of meeting Ben, I feel as though I know him. I read your blog and I feel your heartache. And you are right – Ben certainly did touch a lot of lives, including mine.
Grateful for some tender moments in life.
Hating these horrible relapses.
We finished treatment in June.
Scans in two weeks. Scared to death.
These poor warriors and all they go through.
Smiling for mom.
Finding the good moments.
They teach our spirits so much.
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