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.

Wednesday, March 8, 2017

rock and roll

Lately it's been our whole lives.

Eat, sleep, work, rock and roll.

Both big kids are in a big rock and roll review at the high school. I've helped a little with costumes, Tiny has helped a little with costumes, Rico has helped a lot with rides, and love and making sure people eat.

Punk has the lead in Love Shack, sings back up in the opening number and serves as comedic relief and back up dancing.   Kooka sings back up as well, is also a back up dancer and is one of a group of featured dancers that go for three songs straight. They're busy, exhausted, but happy.

Punk says this is the perfect "capstone" to his high school performing career. He's not going out for the spring play in lieu of doing some job hunting.

It makes me cry a little every day. It's not just his last high school performance, it's the last time I will listen to him obsessively rehearse his part in his room, the last time I'll host his friends for a cast party, the last time he'll run into the living room and say, "How does this sound?" It's the last time I'll watch some of these kids on stage - some of these kids that I've worked with and watched and loved since they were in third grade.

I'm depressing myself - so I'll stop now. But seriously, how could you not miss this?:
video

Punk and one of my favorite Pinnacle kids Anna - leading "Love Shack"
Kooka in "You Keep Me Hanging On"

Kooka in red and her Pinnacle sister Rachel in the closer.




Punk and one of his best friends partnering up for a disco dance in "Shake Your Groove Thing."


This is the first girl Punk ever had a play date with. Granted, they were two weeks old and in baby buckets - but still.


I can't hear you.


Monday, February 20, 2017

side effects

Rico got pink eye.

Then he got a sore throat.

Then a fever.

Then a cough.

We'd all been sick at some point during the past month, so we didn't think too much of it, although the whole scenario was painfully familiar, we tried to grin and bear it - just hoping it would pass.

In addition to his neuropathic pain,  fatigue, and general malaise, it was a rough couple of weeks.

Days went by. Then a week. We're nearing two when Rico finally decides to do a bit more googling.

Two weeks ago the pain center at Mayo put him on a larger dosage of the pain med Gabapentin.

Guess what google has to say about it:

Adverse reactions observed in clinical trials include: Very common: neuropathy (check), viral infection (check). Common: pneumonia (check - though that was last go-round), respiratory infection (check), uti (no), infection (check) annnnnnnnd otis media/pink eye (check).

What the WHAT?!!

Long story short - read your med labels kids, and ask what the side effects are. Ask and then ask again. Because even when Rico went in to the clinic (not his regular doctor - just a random guy), for his pink eye, that dude did not even make the connection.

We're not sure what the next course of action will be - but here's hoping it doesn't give him ear infections and athlete's foot.



Friday, February 17, 2017

can we not?

While perusing sites for Punk's graduation announcements, I found approximately one dozen layouts and promotions for kindergarten graduation. Lest you think I exaggerate, I've included just some for your enjoyment.


This one denotes the academy conferring the kid's diploma. Because aren't we all curious about which school has executed the daunting task of preparing her for the rigors of "East Prairie Institute of Pre-prep Preparatory Junior Elementary School"?

Ahhhhhh - just another way in which I have grossly neglected my children.

I did not send out embossed photos of my children graduating from diapers, mastering their times tables, or finally acquiring the skills to load the dishwasher without stabbing themselves with the steak knives. I didn't notify the printers when they sang the alphabet song for the first time, or when they realized that "elemenopee" is actually 5 letters - not one. I didn't tell anybody about the first time they shampooed their own hair, or plugged in a vacuum without electrocuting anybody. I didn't announce the first time they picked up all of the dog poop in the front yard without me triple checking it. 

I mean I just assumed we were alllllllll doing this.  I thought it was a parenting standard - like in the national guidebook or something.

Kindergarten is important - don't get me wrong, but can we all get on the same page here?

I feel like I've missed something. When did this become a thing? And can it not be? Because between you and I, ain't nobody got time for that. I'm too busy posting videos of them getting their wisdom teeth taken out and getting slapped in the face by stingrays (because - you know - that $#!+'s funny).