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.