Friday, December 30, 2016

some days

Some days are sad.

Not for yourself, but for people you love.

Today is one of those days. A day when there is nothing I can do, nothing Rico can do, but still we are sad for people we love. One or two of them in particular. And there are no words we can say to make things better for either of them.

So I cry, because their hurt hurts me - and as a wise girl told me just last night - "It feels good to cry - it rinses you out."

Time to take time, cause spring will turn to fall
In just no time at all....

christmas pictures

Nothing to write - except being a whole family felt extra good this year. Hope your Christmas was Merry.

Cheesball making

Our new forever tree. We had to put extra smelly scentsicles on it to compensate. 

Tiny sporting my "Little Miss Norway 1977" bunad.

Kooka sporting my 1998 little red dress.


Christmas Eve snacks.


If you zoom in you can see Yoda's amazement at Scrappy actually opening his gift from her.

A fully tricked out cane from Punk.

18 years in the making. A quilt made of his favorite childhood clothes. Yeah, I somehow managed to do that. I also had lots of online encouragement from Sara of "Sara blanket fame".

Treats for St. Nick and Santa Mouse.

Christmas morning. A Slytherin cardigan for Punk (even though he must be a Gryffinpuff), a turquoise ukelele for Kooka and a purple canopy for Tiny.

Christmas morning pancakes.


Thursday, December 22, 2016

what love sounds like

I am not sure what I did to deserve these guys.

But all of them have made our lives more beautiful.

Amber messages me this week and says, "I know this is random, but I have something for you, and I'd rather give it to you in person. Can I stop by on Thursday."

(It was indeed random, since her last Facebook post was from Denmark.)

So we make a date for Thursday morning, and then this happens:



They're all home from college - kids we know from shows, from choir, from forever. They are some of my favorite people in the world. When I asked if they were out caroling at 10 am they said, "No, just for you."

It was sort of impossible not to cry.
(But I waited until they left.)

They came bearing music (with choreography), cookies from Jack who couldn't make it and warm brownies.

Wait - not just brownies, a pan of brownies ON TOP OF BROWNIES!!!



Our kids were in school, Rico had just left for a coffee date, so it was a private concert. "Rudolph", "Jingle Bells", and "We Wish You A Merry Christmas". There were lots of hugs and laughs and Merry Christmases. I told them where to find Rico, and rumor has it hunted him down and serenaded the senior coffee party at McDonalds.

The world is a good place.
People like this make it even better.
Merry Christmas Amber and Erin and Samantha, and Emily and Steven, and Nathan, and Abby and Sandy - thanks for making this Christmas full of the good stuff.

Monday, December 19, 2016

six months

The scans were clean. Merry Christmas to us.

And while we are beyond grateful, beyond blessed - happy isn't the word I'd use walking out of Mayo Clinic.

Because every time we walk out, other people are walking into oncology.

Rewind 10 months and those people are us.

Rewind 12 months and we aren't even in that door yet, we are in ICU praying for hours, for days, for weeks.

Today there are 17 year-olds in that waiting room. There are grandparents, wives, husbands, teachers, cousins, aunts, uncles, friends.

It's like being thrilled that you found a lifeboat on the Titanic.

There just has to be more we can do.

We had to stop in the medical supply store for Rico's compression socks. They had an entire wall of silicone cancer awareness bracelets. I thought maybe I would get one.

Sarcoma is yellow.

Royal blue for Gram's colon.

Then there's my mom.
Lung cancer is white
Breast cancer is pink.
Esophageal cancer is periwinkle. Yeah - periwinkle. There are so damn many cancers they have resorted to periwinkle.

I stopped counting at 12. Somehow, I didn't think me sporting a dozen rubber bands was going to change much.

I'm not even sure where I'm going with this, except maybe here:

For as good as it felt to hear that doctor say, "There is no cancer."  I knew that we were just one family hearing that just one day, and my heart hurts for that.

So when Dr. Jean told us that he was a bit anemic, we knew we could fix that with some spinach.
When she said we needed to schedule follow-up surgery to put a post in his femur, we were thrilled that it's a two day hospital stay. When she said that his nerve damage is permanent, that he would never ski again, I was grateful for that.  Because the alternatives were all around us. That limp is the only thing I wished for last Christmas. It's the only thing I'll ever want - still.







Friday, December 16, 2016

life

We had a gas leak in our basement tonight.

Furnace gas and CO too.

One outside of our house too. What are the odds?

Well, it's 2016 - and it's US we're talking about, soooooo. . .

Both the gas company and furnace repair were here tonight. A mere $4,500 should put us back to normal.

We also found a mouse. Yeah, like somehow the smell of gas is creeping up the stairs choking me out and yet Speedy Gonzales and Chuck E. Cheese are down there breathing easy and hosting a holiday shindig.

Regardless, we have a LOT to be grateful for.

We get to stay inside wrapping presents and drinking cocoa and making truffles and snuggling and breathing oxygen.



Tiny is doing much better - still can't lift her chin, but the chiropractor and the neck brace have worked miracles since Wednesday.

We had the foresight to go grocery shopping last night, so haven't had to venture out much.

Both kids got into the big Rock and Roll revue at the high school. Punk got lead on a song - which is a pretty big honor, and also get to perform in 5 other pieces. Kooka gets to perform in five pieces - dancing on some and backing vocals on others.

We got to make some icy suncatchers and can't wait to see how they turn out.




















The snow. It's so beautiful.

Punk's favorite teacher in the world (the same one who inspired him to photoshop himself into this civil war photo) submitted an entire portfolio of his work to an art contest.


The big kids made it safely to Wisconsin for the weekend.

We are almost finished with homemade presents - which take much more time (and love) than I originally anticipated. Eight days left!


Wednesday, December 14, 2016

all good

There is much to be grateful for this week.

A birthday with chicken enchiladas and raspberry cake.















Snow. Beautiful snow.



















A high school Christmas concert featuring both big kids. His half of the tenor section is Punk's favorite part of school each day. "The Left Six"  - as they call themselves are pretty talented, but also pretty hilarious. We'll miss them next year.

















Sharing week at work meant dinner with these three instead of class. They've been together for six years now. I expect they'll be in each other's weddings some day.
















So far so good right? Even the mammogram came back clear - so clearly things are looking up for us health wise.

Oh wait.


How am I the only person in the house that hear bloodcurdling cries at 3 am?

For real - even the dog didn't move.

I head into Tiny's room and she is sobbing, saying, "I did something. I did something to my neck."  I ask her to sit up, see if she can turn it. She can't. Can't even move her arms.

I tell her it's OK. We are two blocks from the hospital. I put on boots and a jacket and tell Rico what's up.

Like a freaking Christmas Miracle, he somehow teleports himself into that room without a brace, or a cane, or even a groan. He makes good time too.

Again I ask her if she can sit up, so I can pick her up to take her to the car. That's when she tells us. "I can't. I can't move anything but my feet."

It's 3 am.
Our kid wakes up from a dead sleep half paralyzed.
I can't lift her without causing excruciating pain.
Rico can't lift her at all.

Even though she has no fever, nothing weird, she's clearly in unbearable pain.
We call the ambulance.


After a ride to the local ER, she is given Vicodin, x-rays, a neck brace, a day off of school and the diagnosis of torticollus (basically twisted neck muscle accompanied by muscle spasms).


They refer us to a chiropractor who blessedly was able to squeeze her in today. It didn't eliminate the situation, and she's still sporting the "neck cast" which she's asked us all to sign.

Needless to say, I did not get to accompany Rico to Mayo for his six month scans today.

2016 has not been our most stellar work. But if those scans come back clean - it's all good.






Friday, December 9, 2016

healing

 
Some days feel like healing. Some days not.

The past week has felt like not.

Rico still has a cough, but wheezy, tired coughs. The kind that make me worry all over again. They say it is just the pneumonia, but it's hard to trust "just" anything anymore.

But tonight felt different.


For three years we've wanted to attend the Choir for a Cause event at the Mall of America. A local radio station hosts the event, where a choir of thousands sings Zach Sobiech's song Clouds as part of a radiothon to benefit cancer research.  (If you're unfamiliar with Zach's story you can read more here.)

We've always wanted to go, but we've never been able to make it until this year.

This year - it was a priority. Zach had sarcoma - the rarest form of cancer, the least researched, the most underfunded. His family and ours - we know this monster. We had to be there.

We brought 12 singers from the studio with us.

I don't really have words for how it felt to be a part of something so simple, so beautiful, so huge, but for tonight it felt like healing.




Thursday, December 8, 2016

Wednesday, December 7, 2016

how?

We're pretty tolerant people.

Relatively patient.

But now it's strep.

Like how does this even happen? The whole family has basically been wearing hazmat masks and drinking Zithromax smoothies for two weeks.

There's good stuff around the bend, good stuff around the bend.

Tuesday, December 6, 2016

advocate


Mine is one of them.

It's true, she's not being rude. She doesn't dislike you. She wants to be included. She wants to say thank you. She wants the giggles to come easily, wants to tell you she knows the answer, wants to read you the story in her really great silly voices, she wants to sing in the choir with the other kids.

She can't.

I asked her what it feels like when the worry comes and steals her voice. She said she wasn't sure. I asked if she could draw the feeling. 

This is it:




"He is mostly orange has a scary smile like the Joker on Batman, and a mohawk - but sideways. His hands are SO big and his pet is a black widow spider on a leash and he even has spiders on his knees and spiders for feet."

"But you're not even afraid of spiders."

"I know - but most people are, so I just want you to see that it feels really scary."
( I asked her if I could share her picture - she said yes.)

That is how it feels to be selectively mute.

Rico and I have raised 5 kids collectively. If you know us, you'll be quick to point out that two of ours have no freaking problem speaking - it's actually a hobby of sorts. And for the record - the other two seem to take no issue with it either. But this one is struggling.

And it's hard, because one of the things we want for our kids is for them to know they matter, that they have a voice, that they deserve to be heard.

So Rico and I need to step up - step out - advocate when she can't.  Her teachers have been wonderful (one of them so positively perfect that I don't think Yoda will ever love anyone more). But there have been other people - even other professionals who've said,  "Well, I've worked with selective mutes before, I'm pretty experienced"  or "Yes, I understand the situation." or "She's just shy."

To them I say - no. 

Just no.

I mean look at that picture! Imagine feeling that in your chest every time you had to ask to use the bathroom, or get a drink of water. Even I can't come to grips with that $#!t and I live with her - it's terrifying.  Besides, my kid isn't "a selective mute"  - she is Yoda who sometimes is so afraid that she can't talk. She is sarcastic, quick witted, fiercely loyal, adores family game nights and movies. She loves dance class and hates mushrooms.  She has fire in her soul and grace in her heart. She is Yoda - beautiful, silly, wishes she was still in kindergarten Yoda.

And sometimes she is quiet, because as another child who shares her struggles says:





whew

It seems like we can see the other side of the mountain for now. Punk is still home after days of 102 fevers, cough and crud in his lungs. Rico is still healing.  So for now we're a little more optimistic about the week. Thanks for the prayers and stuff.

Thursday, December 1, 2016

home

Rico is home.

They said they wanted him fever free for 24 hours before he was discharged to make sure it wasn't sepsis.

He is not fever free yet.

But he is home.

Tiny will be on day three of antibiotics, so will try school tomorrow. I'm not sure how she'll fare, but we're trying.

Punk's still coughing, I'm still coughing.

Kooka took five hours of dance today - and taught for two.

Clearly I gave that child all of the superior genetic material - and the first round of antibiotics.

Wednesday, November 30, 2016

a little help

If you would be so kind, please leave us a comment if you are able. Apparently we're having a little trouble with comments, and we're trying to figure it out. If you try and can't leave one - would you please message us and let us know what happens when you try?

Thanks.

flashbacks

Leaving for the hospital in the middle of the night is never fun.

It's even worse when you come home alone. There are the constant reminders that he is supposed to be here.

But he isn't.

The undrunk tea I made for him, that was still just too hot to sip.






The pot roast mix he left out to use tonight because Wednesdays are the only day we can sneak in family dinners these days - and family dinners are his favorite.


The stack of Christmas books we always wrap together on the 30th to use as an advent calendar for the kids.



All of it still here with me.
But not him.

So I roll the garbage to the curb, unload the dishwasher, doll out the Zithromax - all the while talking to myself - telling myself it's just a little pneumonia, that the fever is down.
And then a little voice tells me:
"But it's not gone"

The antibiotics seem to be working:
"But they said it could be sepsis."

We all have the same illness:
"But we don't all have the same immune systems."

He's only two minutes away:
"How'd that work for you last time?"

Which always brings me to the flashback.


I don't know what it's like to have PTSD. I won't claim that I do. I only know how it feels to walk into the same hospital space, with the same holiday decorations, the same weather outside, the same path to his room, the same carols playing in the background.

It feels the F#¢?!NG SAME!

It feels like last year when nobody would look at me and seven people were poking and prodding and talking too loud at him.
It feels like being in that lobby pacing on my cell phone, tears streaming down my face trying to defend my decision to bring him to this particular place because quite frankly he wouldn't have survived the journey to Mayo.
It feels like nurses saying, "No honey, I wouldn't leave. I know you have three kids at home alone. I know you live three minutes from here, but in his condition three minutes is more than we may have."
It feels like walking into Tiny's kindergarten classroom to finding her drawing a picture of the two of them with aqua blue tears running down her face, and the words "Get well daddy" running across the top.
It feels like waking up Punk in the middle of the night to say, "You're in charge."
It feels like knowing there is nothing I'll ever love the way I love him, and knowing that my love is not enough.

It feels like that.
But I suppose that is not reality.
What is reality is that he never goes anywhere without his Sara blanket.


And that no matter what bed he's in, he will always spill Apple Cinnamon Cheerios onto it.

Always.





Tuesday, November 29, 2016

more hospital

It's almost 2 am and the whole world feels like "dejavu all over again."

Sunday, November 27, 2016

giving cards

The day after Thanksgiving means our giving cards are up.


I'm still not sure if they work.

But we keep trying.

The idea is that throughout the season you find one or two things a week that you can do to be a gift to others.  When you've done one, you drop the card into the box, and on Christmas Eve we open the box and remember those moments.

We've been doing this for four years - we've never completed them all, but we keep at it. Right now there is one in the box - it's Tiny's - she's good at kicking this off.


I also do some work for the Spread Sunshine Gang, and while doing so, found this list from Tiny Buddha.  I love this list too, and some of the things on it are already on our giving cards because they're everything everybody ever wishes for.

1. Try to accept people with an open mind and refrain from making judgments, which are often wrong anyway. 
2. Let them know how much you appreciate them. 
3. Any deed done for someone else is a kind one when you don’t expect something in return.
4. Do little things like hold doors open or let folk go in or out first. Little things can make a big difference for someone who’s not having a great day. 
5. Accept them for who they are and who they strive to be. 
6. Let them know they’ve made you smile. 
7. Be with them when they need you. For the rest of the time, let them be free. 
8. Tell them the truth. 
9. Tell them why they make a difference in your life that no one else could possibly make—why their particular brand of “special” makes the world a better place for everyone they meet in it. 
10. Help them help themselves and be independent. 
11. Believe in them and give them hope. 
12. Give a simple well meaning smile. 
13. The kindest thing you can do for someone else is to take good care of your own mind, body and soul. This enables kindness in all things. 
14. Spend time listening with the intent of learning. I joined an art guild that is mostly made up of elderly artists who have the most amazing life stories and the best tips and trick for creating artwork. I feel like I get so much more in return for doing nothing more than enjoying their company! (Suzi Ra)
15. The best thing my parents ever taught me—the Golden Rule: do unto others as you would have them do unto you! 
16. Be there for them when they fall and not say I told you so.
17. Give them the space to be. 
18. Lend your shoulder to cry on. 
19. Thank them for being themselves. 
20. Take a moment to send someone a note thanking them for something they have done for you in the past. For example, a good teacher or a good manager, or someone who was a mentor or role model. 
21. Treat each person with respect for his or her individuality. 
22. Offer encouragement after a failure. Acceptance of even the weirdest things they possess. A tap for a job well done. A “thank you” to every simple yet life-changing encounter. 
23. Forgive. 
24. Pay attention to them. From the clerk at the store to your kids at home, most people just want to be heard and acknowledged. Understanding comes later, but everyone can pay attention now. 
25. Listen to someone without trying to fix their problem. 

If any of you guys have ideas about how to make the season more merry, less lonely, more happy, more beautiful, I'd love to hear them.

Monday, November 21, 2016

how to help

Here are links for friends and family who are looking for ways to help Breanna and her family:

GO FUND ME

CARING BRIDGE

The world is a good place. Let's show her how good.


Sunday, November 20, 2016

not fair

I will not go into too many details, because it is not my story to tell, but I can tell you this much:

Life is not fair.

And no matter the hand you've been dealt - there will always be someone who is struggling more, someone who is hurting, someone . . . somewhere.

So what I ask today, is that if YOU (yes YOU reading this), have enough to give  - get to it.  Don't complain, just do. Just give. Just know that the world needs you - whatever you've got. Stop complaining - start doing.

Be grateful  - for every moment - every hug, every step, every breath.  Be grateful.

And say a prayer for Bre.

Please.

Even if you've never met, just pray, just be kind, just do some good. All the love we put out has to land somewhere.

Sunday, November 13, 2016

punk's show

If you scroll down you'll see that Punk's spent the entire school year thus far preparing for this role. 

We're sad to see it go. 

Punk says he's basically playing his grandpa Gary. Everyone else says it's just Punk fast-forwarding 60 years. Either way- it is my favorite thing he has done so far.

Rock on Grandpa Vanderhoff, rock on.






                     





You Can't Take It a With You Grandpa's Prayer

Punk's final prayer as Grandpa Vanderhoff.

we don't have too much time you know - any of us

Punk has been acting since before he could speak - making goofy faces, silly noises, just to see what the rest of us would do.

He's always been good at making us laugh. He's good at making most people laugh. It's why he usually plays the crazy sidekick, the wise-@$$ best friend. He knows himself - he plays to his strengths. But this year - senior year, he was asked to stepit up a notch and take on the lead role as Grandpa Martin Vanderhoff in You Can't Take It With You.

He wasn't a Disney Character. He wasn't a snarky teenager, or even a super villian. He was sweet, he was funny, and he was exactly the way I imagine Punk will grow up to be.

Of course there are hundreds of pictures, and yes, video I am not supposed to shoot, but did.

The crowd was quiet today, but here's a glimpse of Punk at 78 (and yes - there will be more)


Wednesday, November 9, 2016

ug

The election.

Just UG.

Doesn't matter who I voted for (trust me, it truly doesn't).

What matters most to me is that we could have elected Batman riding a damn rainbow unicorn and people would still be treating each other like total crap.





And ain't NOBODY in any office gonna fix that.

That's on us - all of us.

Sunday, November 6, 2016

Rico update

Back to Mayo tomorrow.

For the most part, it is routine - he wants to get off of his pulmonary hypertention medication - which requires a lengthy sabbatical from the drug as well as an hour long test, and follow-up meetings.

His next scan is in early December.

It was about a year ago that we knew something was terribly wrong - something that couldn't be solved with an antibiotic, or a hospital dose of ibuprofen. Last year everything was scary, and unknown, and tiptoes and eggshells - so for now, a trip to Mayo seems pretty OK.

Sunday, October 30, 2016

the lasts


I am acutely aware that time is slipping through my fingers this year.  Every day is like trying to hold water - trying to save something I know is unsavable, yet knowing it is the only thing worth saving at all.

First are easy to keep track of, easy to relish. By it's very nature, "first" implies that there are more to come.

First words.

First steps.

First day of school.

But lasts, lasts are more uncertain. Some of them are clear: the last choir concert; the last day of school, the last homecoming dance.  But I know that right now, we are living many of our "lasts" and I don't even know it.

Senior year is hitting me hard.

When will be the last time Punk snuggles up to Yoda and reads her a bedtime story?  Is this the last year he'll carve pumpkins with us, or will he come back?





Our last school night family dinner? The last doodle I'll find in the kitchen? The last time he'll ask me to help him study for a test? The last family movie night?

And even some that I should know the answers to - I don't. He has the lead in the fall play - but will this be his last play? Will he audition for another? Will he get a part? Will he decide to try theater in college? Will he find something else.

We don't know.

So much like the entire first year of his life, I find myself relishing everything - because I just don't know.

We lived one of our "lasts" last night. Since 2008, Punk and Kooka have held an annual Halloween party. At first, it was just a few neighborhood friends, then it morphed into buddies from school, then a few girls from Punk's grade showed up. Eventually, the parties had to be split up - early for Kooka, late for Punk.


But this year, was different.

This year was the last.


We told ourselves that Kooka will carry the tradition - and she will - she had several of her own friends there last night. But I will miss the 70 or so classmates of Punk's that have been a staple at this party for almost a decade. Some of them stop in for cider and a quick snack, some of them hang out with Rico and I, some of them taking selfies in our decked out front yard, some of them hunker in for the long haul to play cards and watch horrible movies.


They know the rules - either dress up, or be subjected to dancing Michael Jackson's Thriller as a front porch solo.  They go all out - full body paint, hand-sewed, meticulously made-up, even shaving heads and lighting themselves on fire

(yeah - I'm a good chaperone like that).

It is one of the best parts of our year.

Last year Punk's crew dressed up as the Scooby Squad, this year - the Suicide Squad. The lengths they go to always amazes me.


I know Halloween is tomorrow. But I think I cried more over this Halloween party than I will at his graduation party. And then three years later, I'll do it all over again with some of these guys:

By then, maybe Yoda will have had enough of Halloween, maybe she'll be cool with a plate of taco dip and binge watching Twilight Zone.  I can only hope, because keeping track of the lasts is so much harder than I thought it would be.