Wednesday, May 24, 2017

ten days

It's almost here.

The day that I have been dreading for over 6,500 days.

According to my living room table I have taken no less than two pictures each day in preparation for this one. At this point an attempt to organize them seems futile - and if I'm being completely honest counter-intuitive. I'd rather spend time with the actual kid - not the ghosts of kodak. Because let's be real - this ain't no celebration.

It's not.

I mean, the kid did the bare minimum of what society asks somebody with his capabilities to do: learn enough to function and participate in society. OK, yeah, let's give him a pat on the back and all, it might even be cake worthy - but let's be real:

No - this isn't a celebration.

As a matter of fact - I'm not sure what it is. I'm not scared for him - he's a great kid, with a good plan, and a strong support system. I'm proud of him, and who he is, but not overly impressed just because he aces a math test or writes a killer history paper.

I'm sad. Mostly sad. And yes, I know this is what is supposed to happen in life, and I know that I would be much sadder if he weren't the kind of kid who was capable of heading out to do great things.

But dammit, I'm going to miss him.

I'm going to miss showtunes emanating from the shower every night, the way he kisses his little sister's forehead every time he walks in the door. I'll miss late night cocoa with him, and his all-too-accurate impersonations of everyone at the diner table. I'll miss watching him on stage, and signing his permission forms and hugging him goodnight and walking in to see what he's doodling at his desk. I already miss making pirate treasure maps with him and bedtime stories, and lunchbox notes, and now I will be missing even more.

Maybe that's what a graduation party is. It's not a celebration. It's parents shaking the world by the shoulders with 13,467 photos, a rootbeer keg and 200 gas station donuts saying, "Look at this kid - isn't he funny? Isn't he kind? Isn't he a great piece of work for this world?!" And then silently begging the world to take care of them, to love them as much as we do, to chew them up just enough, but never spit them out.

Ten days.
Ten days.

Thursday, May 18, 2017


We spend the first part of May getting ready for our spring showcase at my work. For Kooka,  this is THE event of the season. But even for Tiny and Punk it was rather eventful. Rico danced once. Tiny danced 4 times (5 if you count the finale). Punk had a senior solo, to "Dentist" from Little Shop of Horrors, danced with the swing group, performed with the theater group and MC'd/did stand up through the rest of the show. Kooka performed in at least every other piece - and the in-between classes were usually ones she helps teach. This is basically a photo/video dump. But still pretty notable for us.

Tuesday, May 9, 2017

the hardest year

Time is a funny thing. In some ways it feels like we've lived a lifetime since last summer, but on the flip side, it seems like it could not possibly have been a year ago that Rico was finishing radiation treatments and preparing for surgery. I remember asking him if he'd like me to record his first steps after surgery because someday he might want to see how far he'd come. He agreed, but also said that he couldn't imagine ever wanting to relive any part of this. I believed he was right, but also harbored hope that I'd get to record many more steps. Two weeks ago was the anniversary of his last radiation treatment, and I revisited some of our video. I shared this compilation with Rico last week, and while tears sprang to our eyes, we said the exact same thing: 

This was the hardest year of our lives, but look at ALL OF THAT LOVE. 
So. Much. Love. 

When it felt like our hearts were empty, the world kept filling them up. The doctor who hugged us and said, "Not on my watch"; the neighbors who cared for our kids; the friends from near and far who sent food and love and flip flop necklaces; the teachers who loved our kids through the hardest moments; Dr. SIMM and the entire staff at Mayo; the crew at the radiation clinic; everybody at the Northfield Retirement Center; our friends at Bethel; the cast of a Grease who was always up to celebrate the little successes with us; strangers who were willing to trade battle stories, and fill us with hope. It was a year full of love, and that's why we're choosing to share it with you. Thank you. For us, this year was about survival, but also about really understanding what it means to live and to love. Thank you all for being a part of our journey. Love, Rico, J, Punk, Kooka and Tiny