Happy New Year.  Please let it be better than the last. J

This will be the final post we place here on Caring Bridge, we thought this would be a fitting moment for it.  Last year on New Years Eve we partied, we celebrated Mason and what was sure to be a better year now that he had reached the maintenance phase of his treatment.  It was a great night.  And then 2020 said, “hold my pandemic cocktail”.

Tonight we will light candles and look at the stars, and though it won’t be the same, we will celebrate Mason. 

There is a library worth of writings out there about grief.  It is a universal human experience.  But despite it being so fundamental, everyone’s experience is unique.

For me, missing Mason feels like a tiny black hole that someone has bored into my chest beneath my breastbone.  It’s so dark and hungry that it threatens to suck in everything around it so that I might disappear entirely into the blackness.  It takes all the remaining energy I have to resist its gravitational pull.  It. Is. Exhausting.

But I have found courage somehow, and I know it’s because there are people around me who pull me forward.  My wife, for one, who has shown the kind of bravery and confidence in this experience that I can only aspire to – I’m in awe of it. And there is Madeline, who deserves to be celebrated this New Years for having a strength that belies her age, and also for being eight years old and finally able to feel like every other eight year old. 

We have been truly overwhelmed by the outpouring of support from our friends and family and total strangers who have come along on this rollercoaster with us.  You truly are the reason we are still standing!   The texts, and cards (I’ve saved them all), and deliveries of food, the Christmas presents and donations to our family (seriously – these have actually been life saving, we can’t thank you enough), and the prayers and “we’re with you” messages and “just-checking-ins” – I’ll never be able to say thank you properly and it’s making my Jewish guilt go all wonky.   

We received a letter the other day from the Methodist Hospital in Houston with a list of people who have donated in Mason’s name to the “green marbles” research program.  And we’ve gotten notes from CHLA and the Bumblebee Foundation with similar donations to help care for other kids like Mason.  Y’all are amazing.  

I want to share a couple of things that have stuck with me from this experience…

My brother (who I simply love so much I don’t have words) wrote that Mason was an ordinary boy who occasionally did extraordinary things.  And I think that’s perhaps the most apt description of him that I’ve ever heard.  He was extraordinary in so many ways, especially in the face of a horrifying situation, but underneath it all he was just human, like all of us.  It was how he played the part that mattered.

A couple of months ago my best friend and Mason’s fairy godmother, Andi, listened to me spin out about what the future of treatment for Mason looked like and all the possible avenues it could take.  She found, as she so often does, a killer metaphor.  She said, “You’re trying to drive in Nebraska.  But you’re not in Nebraska and you don’t have a map.  When you get to Nebraska you’ll get a map, but right now, drive the road you’re on.”

And finally, there’s Mason.  The final weekend of his life, after we knew there was not going to be another treatment, there was not going to be a cure, he looked up at me and said, “Mommy, I think I’m going to live.”   It broke my heart but I smiled back at him and said, “Let’s do that.”   And he did – that day we went out shopping in Beverly Hills and he bought Christmas ornaments and cookie cutters and decorations and he smiled and laughed and looked everyone in the eye, wishing them happy holidays.   I think, of all the things Mason ever did that I am proud of (and there are so many) this might be the one of which I am the most proud.  Like, they’ll need to invent a new word for it.

I know there will be a lifetime of reckoning to come.  For the moment, I’ve found comfort in one simple way of honoring my extraordinary son.  Mason’s most wonderful quality to me was his enormous capacity for empathy.  I’ve never met someone who was so effortlessly compassionate.   It’s how he was able to thank the nurses who gave him dozens of painful shots in his little thighs, how he was able to appreciate at a young age that an ugly display of anger was really about sadness, why he befriended everyone and despised bullies and dissected the characters in books with remarkable insight.   So now, when faced with something that feels uncomfortable or that makes me angry or resentful, I try to think, “what would Mason tell me - what would Mason want me to do”.   And I feel close to him.

While the Caring Bridge will be retired Mason’s story will continue.  Please follow us @nottoday.cancer on Instagram and Shine Forever Mason on Facebook.  We love this wonderful community around us so very much – you’re stuck with us now! 

As many of you know, I own a podcast company, and there will be a project in honor of Mason to come.  We are also going to be supporting the future of cancer treatment, so that someday we’ll never lose children to this disease.  Please join us in this fight.

Mason is with us. I didn’t know I would be able to feel that, but I’m sure of it.  When I sit down to watch the second season of The Mandalorian, or the next Black Panther movie or when I’m reading Harry Potter to Madeline, or riding a bike, or looking at the stars, I know he’s there.  I just wish I could hold his hand again.

Life is a funny thing sometimes, it’s cyclical and strange and unknowable and cofounding, and also breathtakingly beautiful.  There were beautiful moments in the midst of cancer.  There can be beautiful moments when you least expect them.  Just remember to drive the road you’re on.  And live.

It’s been a shit year.  But, onward!

All my love, 
Stacey 
& Jenn & Madeline & Josh & (somewhere) Mason