A gift of hope

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

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

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

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

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

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

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

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

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

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

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

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

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

Common Courtesy

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

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

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

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

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

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

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