I was having a bad day…and it was only six-thirty in the morning.
As I lay in bed on what I wished would be a lazy Sunday, thoughts of all the crap I was going to have to do instead ran through my head. Dropping my wife’s car off at the auto body shop was number one on my annoyance list, necessitated by some retard who in her haste to get the optimal parking space at Smart & Final backed into us the previous weekend. This of course meant picking up a rental car as well. More wasted time and more wasted money I thought.
“Shit,” I said to myself.
Add to that all the work I had to do around the house, the mandatory trips to Costco and Target, plus a blog post I wanted to knock out, and I knew the day was shot. The week ahead sucked-ass as well. My daughter had a school event on Tuesday night, which meant I had to re-schedule my yoga, and then there were a slew of business meetings coming up that I had no interest in, and blah, blah, blah…..
Right about then my kids ran into the room and jumped on top of me like I was an inflatable raft while yelling at the top of their lungs, “we want French toast, we want French toast.”
Ugh! French toast and all its accoutrements. Eggs, bread, syrup, butter, cinnamon, vanilla, and nutmeg. Fucking nutmeg! And then the dirty pans, sticky dishes, spilled milk, and screams of “his piece is bigger than mine.” I attempted to pull the covers back over my head but the day had already got its Freddy Krueger-like fingerknives in me.
I somehow soldiered through the next 24 hours, dealing with all my Kardashian problems and finally making it to Monday morning when life, as it has been known to do, slapped me upside the head and made me feel like a total douche’.
Some of you know that I am a board member of the McKenna Claire Foundation, a charity founded by my high school friends Kristine and Dave Wetzel after their daughter McKenna (affectionately known as “Macky”) passed away from a rare form of pediatric brain cancer called Diffuse Intrinsic Pontine Giloma (DIPG). In the already horrific world of cancer, it may be the worst. The mortality rate is 100% and it took Macky away exactly six months to the day after she was diagnosed, two weeks shy of her eighth birthday.
On Monday morning I saw the photo at the top of this post, along with a note Kristine had written in reference to it on the MCF Facebook Page. It read as follows;
These are McKenna’s words, written in her journal sometime during her battle. It is one of the many moments that haunt me, but today it perfectly described my mood.
Today was beautiful. The sun was shining, spring was in the air, families were out enjoying the day, but all I did from the time I woke up was cry.
From the time I opened my eyes, the huge hole that is ever- present in our lives was front and center. Sunday mornings are for being lazy, eating pancakes, and enjoying the moment. This is what our Sunday’s used to be like. Today, there was just a sense of loss. One less plate to fill with pancakes, no one to hang out with as I drank my coffee. Our spring visitors, the ducks, came and laid an egg on the pool deck and I wanted so badly to be able to share it with McKenna, who loved the ducks. And it all went downhill from there.
I took the dog for a walk and everywhere I looked it seemed like there were little blond girls with impish smiles out enjoying the day with their families. One little girl rode by on her bike singing Taylor Swift at the top of her lungs and I swear I had to do a double take. It seems I am constantly looking for that flash of a smile, the glimpse of blond hair, yet I am never able to find what I am looking for. It is getting to the point that I do not know what McKenna would look like. I am looking for the almost 8-year-old McKenna, but in reality she would now be almost 10. There is nothing as heartbreaking as not knowing what your child looks like, of having to wonder what her interests would be or if she would have to have a new bike because she would have grown so much.
Our every day is filled with the presence of McKenna, of who she was and the fight she inspires. Some days, however, her absence is what takes precedence. The loss of her potential, the absence of joy in our lives without her. Today was one of those days.
I hope that you enjoyed today. I hope you rode bikes to the beach with your children, that you surfed, played volleyball, or just had a late breakfast together. i hope you all turned your faces to the sun and enjoyed the moment, for this is what is truly important. The small moments where you simply enjoy each others’ company, smile, and feel the love you have for each other. This is what life is all about.
I don’t mind feeling like an idiot. If you’ve read my blog for any amount of time you know that I’ve done enough stupid things in my life to be “familiar” with that feeling. What I do hate more than anything else though is to feel ashamed. It’s something I’ve rarely had to experience in my life, but after reading Kristine’s note that was all I could feel.
Once when I was seventeen I pulled my car over to the side of the road in the middle of the Australian outback at midnight and got out to look up at the night’s sky. There may be no other place on Earth so removed from artificial light and all the heavenly bodies shined brighter that night then I had ever seen them before, literally creating a “dome” of stars from horizon to horizon.
My mind started to wander out into those stars, wondering how they were created, how far they stretched, and if anything was beyond them. I suddenly got overwhelmed with a sense of insignificance and insecurity, the kind that takes your mind to places that are not good. Reflexively I “shut it down,” quickly jumped back in the car, turned on some INXS and shotgunned a couple of Fosters to bring me back to reality.
I can only imagine that that would be about 1/1oooth of what would happen to my mind if either one of my kids were to pass as Macky did. Yet my friends have lived that horror, are still living that horror, and have somehow managed to create some good out of it. I on the other hand was bitching about French toast. Yes, I think ashamed would be the appropriate word.
I am loath to put any sort of positive spin on the death of a seven-year old. It would take the deftest of touches and an almost insanely optimistic view of life to make “lemonade” out of the Wetzel’s situation. And even then, I would never have the right to do it. All I can do is try to find some meaning in it, in the way that only an outsider has that luxury.
Macky lived brightly and died far too soon. The pain of her loss has driven her parents and some very committed friends and family to create an organization dedicated to finding a cure for DIPG. The McKenna Claire Foundation exists and because it does there are children alive today and yet unborn who may never have to write “I do not like this day” nor will their parents have to suffer as my friends do.
This is the part of the post where I usually tell you that you can subscribe to my blog for free or follow me on Twitter, but not today.
I don’t ask for much from my readers. Technically I don’t ask for anything. But today I am going to ask you for a favor. Take a few seconds and “like” the McKenna Claire Foundation’s Facebook page here.
But no matter what you do, make sure to take time out today to tell those that are most important to you that you love them. And remember what a “good day” it is for you.