Gah. Where to start? All the celebrity death? Losing important members of my musical family – the musicians who babysat me during my formative years when I felt super weird in a ’round-hole-square-peg’ way. It turns out that I was not weird at all from the casual observer’s viewpoint, but the insecurities of my childhood led me to these musicians who were making the most of their weirdness and I wanted to “fit in” with that. Dancing around in my Days-of-the-Week underwear, which I never wore on the correct day – Tuesday could be worn on Friday without the Universe falling apart – to “TVC-15” by Bowie and knowing every lyric to “Queen Bitch” at an impressionable age. Wearing my mom’s wigs while belting out “All the Young Dudes” performed by Mott the Hoople (who recently lost their drummer, Dale Griffin) and was famous – mostly – for covering a David Bowie song. And Glenn Frey, who I didn’t love as a solo artist, but adored as an Eagle, and even had the privilege of having him and Joe Walsh sing Happy Birthday (to ME!) on my 24th birthday (my college BFF, Paula, can verify this claim.) So, I’m sad about those losses for sure, but understand that they will live on through my MP3 player, CD’s, vinyl, cassettes and 8-tracks. Yes, I still have some 8-tracks.
Since my last post so much has happened. I broke up with a minor family member after confronting him on some bullshit he said about me at a minor family gathering where I was not present. I have a LOT of steps and halves and related-by-marriage nonsense since my biological father has made it his mission in life to marry multiple women with a shit-load of kids. I liked this particular kid, no, I loved him. He was my favorite out of the whole lot. But he went on to explain that everyone was sick of hearing about my “cancer-kid” and that I should stop playing that card. After all, he had a co-worker who died from cancer so he knows EXACTLY what I’m going through.
Let that sink in for a minute.
Yeah. It hurt. A lot. I know people are sick of our situation, but none of you more than Ben. Trust me. I’m sure he’d much rather be a well child who hasn’t spent the last 12 years fighting a horrendous cancer, but this is the hand we’ve been dealt. While my heart hurt over what this relative said, I don’t feel a bit bad about permanently severing that relationship. He handed me the scissors. I made the cut. I have to take it for what it is and move forward. But it still hurt.
Speaking of always talking about cancer, Ben’s last scans showed no change. It’s good that it hasn’t grown or spread, but it’s bad that the tumors didn’t dissipate with chemo. We’ve been talking with Palliative Care to discuss horrible things like bucket lists and quality of life and making the most of every-single-minute. But trying to get Ben to tell us what he wants – what would make his life better – he has minimal thoughts on that. Or, I guess, he’s not sharing with us what he wants except that he wants to see a volcano. When pressed, he simply states, “I just want to spend time with you and dad and Midge,” (his nickname for Maddy.)
I have to applaud him. If I were asked about my bucket list, I’d be quick to rattle off things like seeing the Northern Lights from a glass igloo in Finland. Getting some work done on my turkey neck. Seeing a game in every NHL arena. Taking a craft beer tour of the US. Visiting the five states that I haven’t been to (AK, ND, ME, VT, NH.) Taking a yoga retreat in an exotic destination. Getting published. And then spending my waning days in an adjustable bed bingeing on Netflix and potato chips, while periodically peering into a mirror to admire my youthful neck, surrounded by the people I love.
But Ben isn’t a taker. He doesn’t want people to feel compelled to make his life better. Over the holidays, we were invited to a party for “There With Care,” a wonderful charity that has given us so much since we’ve lived in Denver. The party-goers were asked to bring a gift to donate to the myriad of affected families in Colorado. When we walked in to the event, there were literally tables overflowing with amazing gifts. Ben and Mad were told to choose any present they desired. I mean, there were brand new iPods! The 64-gig ones! So, when Ben chose a $25 gift card to Target and Madeline followed suit, my heart exploded. I marveled over the fact that I – a self-absorbed asshole who probably would have nicked the 64-gig iPod – have raised two of the most non-asshole-y kids in the Universe. And for one of them to have to worry about getting an extension on life while the other is worried about losing her only sibling, well, they deserve to be a little bit of an asshole. Yet, they aren’t. And I’m proud of that.
I can’t imagine what goes through Ben’s quiet mind. We just passed the two-year anniversary of when his co-warrior, Justin, lost his battle. We’re currently waiting for any crumb of information about another Colorado-based Neuroblastoma warrior, Delaney, who is quickly nearing the end of her battle. I just can’t imagine this loss and pain and how it affects my son. I know how it affects me. I’m terrified. It breaks my heart that all I can do is pat Ben’s hand or give him a hug as the devastation continues to roll in, relentless as high tide. Platitudes aren’t life preservers. I know that for a fact.
But love is. The loss keeps coming but the love keeps us afloat. And we are so thankful to every single soul who takes a minute to think about us, or goes to the amazing extreme – like my sister – who gave the entirety of her family’s Christmas fund to us so we can take our Ben to see a volcano when we get a break in treatment. Beautiful gestures like that make it easier to let go of the hangers-on trying to make us feel icky. We feel enough of that without your help, thank-you-very-much. And from here on out, focusing on the love is an integral part of my mission.
So, I highly recommend you strip down to your underwear and dance to your favorite music, whether it be classic rock, country, or, heck, even Slim Whitman if that’s what you’re into. Anything will do. Invite the love in and let it soothe your soul. We all deserve that from time to time.
And if you get in trouble at work or arrested at the grocery store for public indecency, tell them it’s for Ben. If that doesn’t work, hopefully you read my jail-experience posts a couple of years ago. There are some helpful tips in there.
Sending so much love to all of you. So thankful for all that’s sent to us in return. <3