Wednesday, May 24, 2017

ten days

It's almost here.

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

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

showcase

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


Saturday, April 22, 2017

a year

It was a year ago on Friday that Rico rang the bell to signal his final radiation treatment. Today there is this:





Monday, April 17, 2017

whoops



Clean scans!

Our schedules have been so chaotic that I completely neglected to mention clean scans! Of course we mentioned it to everyone we saw at work, or talked to on the phone, or met while picking out oranges in the grocery store - but I didn't write it here - CLEAN SCANS!

That makes three - we'll take it.

Sunday, March 26, 2017

busy stuff

March through mid May are notoriously busy for us. Notoriously, obnoxiously busy for us. Notoriously, obnoxiously, but crap-we-brought-this-on-ourselves busy for us.

But this year is busy with final moments and new beginnings and all kinds of emotion.

1) Kooka and I are busy judging and working at dance competitions nearly every weekend. This weekend was Iowa. Not just Iowa, like 90 minutes from our house Iowa. Nope. This was like 5 and a half hours, we-could-have-been-in-Chicago-by-now, not-that-it matters-because-we're-really-in-the-middle-of-Amish-Country-and-I'm-not-even-kidding-hey-can-I-get-a-gas-station-or-maybe-even-a-street-light-here? Iowa. Ten hours. Ten hours in the car. I didn't even know Amish people liked to hip-hop.

2) Punk just returned from his first (and last) high school trip - a week-long trip to Disney World to perform with the choir. Which means we had to wait a whole week before we could . . . .

3) Take the whole family to see the new Beauty and the Beast movie together. We'd vowed not to see it with anyone else, since we first heard about it's release. It has been Punk's favorite movie since he was four years old, and also the first TWO plays where he got to really act. (and Kooka got to really perform as well, when her 7 year old brother became violently ill, and she surprised us all by knowing every line and every song and every cue at only 4 years old). Needless to say this movie was a big deal. Punk and I teared up during the opening credits and sobbed audibly for several minutes near near the end.

4) All of us are preparing for spring showcase in May, where Punk will MC and dance once, Yoda will dance twice and help the little kids, and Kooka will dance, sing, play the ukelele, breathe fire, stick her head in a lion's mouth, swallow swords or whatever it is she needs to do for two hours straight.

5) I just ordered Punk's graduation announcements. Graduation announcements. How? How are we here? How is this real? He's requested White Castle sliders and gas station donuts - which we cannot bring ourselves to provide.

6) We are all holding our breath for Rico's next scan. Each new scan is like pouring water from a boiling tea kettle. The pressure is off for the moment, things are cool, but then it's back to the burner, where things slowly heat up until until a new 90 days has passed. All good mojo and prayers will be appreciated.

7) Rico has been obsessing about his new purchase - a mobility scooter. He fought the decision quite handily, because you know - he didn't want to be this guy:

But then we pointed out the stuff he'd be missing without one: walking the six blocks from school with Tiny on sunny spring days, traipsing through the zoo without relying on somebody to push the wheelchair, walks to the park  - where he will undoubtedly get his head stuck in the monkey bars while attempting an Olympic-style dismount, or break his arm challenging the captain of the varsity basketball team to a quick game of HORSE. If he manages to survive those, he'll most certainly roll it attempting to baha across the neighbor's lawn at 17 miles per hour (because god-forbid he order the slower model). Usain Bolt runs 24 miles per hour and that's at a dead sprint. Those Ethopian runners are only making tracks at 16 miles per hour. I don't know who he thinks he's going walking through the zoo with - but it's nobody in this family. P.S. Do yourself a favor - don't mention the "scooter" - but you can ask about his new "convertable".

8) Punk's final concert and Kooka's first high school vocal solo will be this weekend. The seniors present their parents with roses and we stand with our kids. I will however will not be there for this reallllly tearjerking moment (see #1 and Wikipedia's Amish folk-dancing for more info). Rico, however, will attend, he should be able to make it from his seat to the stage in about .00078 seconds.

Tuesday, March 21, 2017

tired

There is not much to say right now. Life seems to be barreling along, despite the fact that we aren't really ready for it.

It was less than a year ago that we were preparing for Rico's surgery. We are better - all of us, but we are not quite "back to normal" though the rest of the world seems to be. There are mobility issues, pain management issues, anxiety issues, therapy issues, - lots and lots of freaking issues. Nothing we can't handle, and yet, we are still not quite ready to jump back into the world full force. We need time to recoup, recover, brace ourselves for scans, therapy and getting used to life again.

It feels wrong.

It feels like we should be tackling life, running around paying back all of those kind things the world was doing for us, but the truth is - we're exhausted. I wish it weren't true, and I know it won't always be - but for now, it is what it is.


Thursday, March 9, 2017

whew

It's been a rough month.

It finally feels like we can share what we're worried about - only because we've been reassured 47 times not to be worried about it.

When Rico has his last bout of illness - the pink eye, the coughs, the sore throat -  his fevers were cyclical, and his night sweats were back. If you've been with us for a while - you'll remember - that's how this whole nightmare began.

We knew the flu was going around. We knew everybody in town was getting sick. But we also knew the reality of what these things could mean.

So we cried and we waited and we didn't sleep and we didn't say much. We just lived in a little hollow of hope - praying this time was different.

It was.

Mayo says that his scans were so clean last time there is no way these symptoms would present this quickly. His cough is gone - the fevers too.

For today things are back to "normal": he's all dressed up and off to a meeting; we're balancing work and school activities; we're helping Punk make college plans; our summer agenda is starting to come together. For now, we feel steady. I think life will always feel like a bit like a balance beam, but maybe we are all becoming better gymnasts.