Saturday, January 28, 2017

Thursday, January 26, 2017

fear

Punk drew this a few years ago. We've been putting some things together for a college portfolio when it popped up again. It was fitting, because our family has been talking a lot about fear lately.  In part, it's been spurred on by Tiny's experience with mutism. 

If we've met, you likely know that neither I, nor my husband, nor my two older children have trouble with speaking. On the contrary, one of them would likely make a career out of it if possible, and the other would be hot on his heels.

But Tiny is different.

It took a while for everyone to understand how something so basic, so simple, so LOVED by the rest of us, was seemingly impossible for her.  It took a while, but we got there.

For me, it is snakes. If you've seen the Ellen video you know - if you haven't, well it's here. That's me at  3:22 every time I even imagine a snake. 

For Kooka, it's spiders. She can't even sleep in a room where she's seen a spider. Can't be in the same room with a dead spider. 

This is funny, because I am a bit of a spider rescuer. I'll get the spider from her room, take it outside, make sure it has a safe spot, wish it godspeed and be on my way.

Kooka has picked up wild snakes with her bare hands. I actually watched it happen one time and stood there frozen, thinking "Be a shame if that's venomous, because there's not a damn thing I can do about this situation."

And then there's this kid:



But she feels the exact same way, the exact same fear, when she is asked to speak.

The difference here is that nobody asks me to hold a snake for 8 hours a day. 
Nobody is dropping spiders down Kooka's back during civics class.
But Tiny - she's feeling like somebody is dropping spiders down her back for several hours per day.

We tell ourselves every day, it doesn't matter what any of us are afraid of - they key to understanding, the key to helping each other is knowing that even if the catalyst is different, the feeling is the same. When we put ourselves in that mindset, it's much easier to get through the tough times.  

Telling her to not be afraid to say hi to her classmates, feels exactly the same as someone laying a snake on my pillow while I sleep and telling me not to worry about it. Telling her it's OK to ask for help during math time, feels the same as asking Punk to bungee jump from the Golden Gate Bridge.

We also realize that nothing will get better here if we all just keep telling each other how stupid it is to be afraid of snakes, or spiders, or heights, or speaking.  It might very well be stupid, but that won't make the feeling go away.

So we keep looking for ways to help. We did find a place that's got everyone talking  - literally. It's a specialized institute in the heart of New York City. We looked into taking a family road trip to participate in their intensive program. But at $1,800 per hour, for 12-20 hours, we could probably buy one of those custom Japanese robots to do all of the talking for her.


So that's probably not happening.

Anyway - if you see us around, say hi - especially to Tiny. She may not answer, but we're trying to give her chances to try - which is really all any of us can do.








Friday, January 20, 2017

comfortable

Just when we got a little comfortable . . .

Rico woke up with a larger than golfball sized lump on his elbow.

In our past life we were not ER kind of people. We were not even "I gotta get to the clinic today" kind of people. We were more like, "I've had this pain for three weeks now, maybe I should check it out, or stop eating so many chicken nuggets" kind of people.

But not any more.

Especially when one of you has recently stopped taking heparin, and the specialists at Mayo reiterate how fast even a small, lump-like blood clot can kill you.

We were in the car pretty quickly this morning. Rico even beat me to it.

After three hours, an ultrasound and some prodding, it was discovered that Rico has bursitis.

He has a swollen elbow. The doctor says it's likely because he's using his arms so much more than usual. I was going to point out that it could also be linked to his constant rifling through the fridge looking for the "Brooklyn" mustard, the "New York" cheescake, or the "Manhattan" English muffins - but I digress...

Per usual, treatment for swollen appendages, phalanges and other random bits, is rest and compression. This meant a trip to the pharmacy to purchase yet another fashion accessory. Rico will now be wearing at least one thigh high compression stocking each day, compression shorts, and if the ER doctor has his way, not just one but two elbow compression sleeves as well.

At this rate, we expect him to be sporting something like this in March:



This during the dance recital:




Wednesday, January 18, 2017

food

I would not quite say that Rico is back to his old self. He's still housebound, he still needs naps, he's still on narcotics.

But he is up early enough to make business calls. He's walking well enough that I came home from Tiny's appointment and found clean counters. He's with it enough to mock the overpriced banana bread I brought home and laughably compare it to the 19 New York cheesecakes his not-so secret admirers have sent him. (OK - 18 of them were mini baby cheesecakes - but still)

Where does he find these people? And why do they keep encouraging him?!!!

You should see him sift through the fridge -  bypassing two jars of French's, gourmet garlic mustard, a bottle of Grey Poupon, just so he can smuggly slather his sandwich with Zabar's. And he'll just stare at me over the top of that sandwich like I don't even know what "good" tastes like.

He savored the bagels his friends sent him like he was eating caviar with the Sultan of Agrabah. His eyes closed, and he was all, "Oh, yeah baby, this is the stuff."  

I'm like "You're kidding right? We can buy fresh bagels downtown, made right in front of us from a guy, who used to own a bagel shop in Chicago. And thi sbagel that you've saved for three days trumps that?!"

"It's the good New York water they cook it in." He says it like he wants to marry that water.

Ug.

It's everything.

The pizza.
The Chinese food (I'll give him that one).
The chile' rellanos.
No food is as good as the food of his childhood.

But it's cool. Maybe I'm just jealous. I mean it's not like anybody's exporting my hometown favorites 40 years after I left the place.  I haven't had a Bakersfield DerWienerschnitzel or 7-11 Slurpee in over 30 years - clearly my people are gonna need to step it up.

Saturday, January 14, 2017

good stuff

Good stuff happens too.

Rico is feeling better, still in pain, still homebound, but able to get around the house a bit.

Kooka is still all straight A's despite talking a full courseload AND online gym. Yeah - I said online gym. Don't get me started.

Punk was just awarded the highest award a high school artist in our state can win - a Gold Key award. He did win one last year as well, but this year his PORTFOLIO won - which means he had to submit 8 pieces which were related and he won. He actually submitted two portfolios - the other one received honorable mention, and did a self portrait he calls, "Left Brain/Right Brain" (which is my favorite by far.)

Tiny is really good at being six. She spends days reading, and coloring and making cardboard doghouses for her stuffed animals, and changing her American Girl's clothes 27 times a day.

Dance costumes are ordered, which may not sound like such a big deal - but the measuring, the pricing, the shipping dates - ug, the numbers. I'm glad it's done.

That's good stuff for the week. Hope it keeps up.

Wednesday, January 11, 2017

hard


This week I had the chance to talk to somebody who told me their own family's health battle story. It certainly seemed worse than ours - it involved a child, a long distance, 9 months of rehab. It made me feel terribly lucky in comparison.

But the end of the conversation went like this:

Her - "You have so much on your plate right now. I don't understand how you make this look easy. Like how do you keep showing up here with a great attitude and just keep going and volunteering to do things?"

Me - "Well, it's a bit of a coping mechanism, but truthfully, if I can't be with Rico, I want to be with our kids.  And what's going to happen is going to happen regardless of how I feel about it, so I might as well just focus on the good stuff."

Her - "Yeah, but . . . but, it's still HARD. It's still really hard. It's not easy."

Me - "No," I admitted. "No, it's not easy."


I hope I have not made this look easy. In our attempt to keep people informed and keep our lives as positive as possible, and our kids lives as "normal" as they can be, I hope I have not diminished any one else's experience by making this seem easy.

Life is hard. I've cried four times this week - at least. One of them in the grocery store, twice where my six year old felt compelled to comfort me.

Last time was at the pharmacy where they apparently need to see your actual insurance card, a hand written prescription, two forms of ID, and make a call to both the FBI and DEA in order for me to pick up a prescription for someone who clearly is incapable of driving if he's taking what they're dishing out. I think my exact words were, "Hey, sorry I don't have government issued clearance here, and yes, I do realize that my current state may lead you to believe that I, myself am overindulging in Oxycodone, Heparin shots, and fistfulls of Gabapentin - but I assure you, the only reason I look this way is because I'm currently caring for someone who's on a steady diet of afforementioned drugs. Furthermore, as is clearly evidenced by my mom van, the goldfish crumbs covering my every article of clothing and the stack of American Girl library books I am on my way to return -  I do NOT have anywhere near the street credentials to pull off selling this $#!= for a profit.  I would not even  know where to begin, and quite frankly my husband's sleep is more precious to me than Beyonce's dream house, so can we dispense with the formalities and just give me the freaking drugs?!!!"

I might have said that. Or I might have just breathed really heavily and mumbled "thanks"  - I don't really remember. I don't want to remember - because sometimes just doing the bare minimum is hard.

Sometimes scheduling a doctor appointment for anyone else in the family is hard. I had to reschedule Yoda's appointment that we waited two months for, because it's when Rico's surgeon was free. Then I had to reschedule again, so we could work around some other Mayo things. Once we finally got our appointment set up, we were informed she'd need weekly appointments for the near future - at a clinic that is 70 minutes north of our house.

Being the only driver is hard. Technically Punk can drive, but with the greasy snow we've been getting lately, it's not our best option, and he's often at rehearsal and can't get to where we need him to be anyway.

Eating is hard. Feeding people is hard. Rico is basically on bed rest. So it is my job to get all of the groceries, plan meals, make sure kids get home to eat meals, and then get myself and whichever kids need to go with me to work. It was one thing doing it in June, when there was no school, no homework, nobody needing rides - but now, it feels impossible.

Sleeping is hard. Somebody is always waking up in the middle of the night - needing medicine, or to change sleeping positions, (or a paper proofread or needing to go outside to pee - which is usually the dog, but I can't be certain, I might have put Punk out once or twice). Count the 90 minutes it takes me to fall asleep each night, and nighttime becomes just gasoline soaked rags of anxiety. The alarm goes off at 6am. Not sleeping is hard too.

Going to church is hard. It's a place where things should feel peaceful, and we should be able to breathe, but by Sunday I am so exhausted I can barely get out of bed. Even if Rico could get to the car - he couldn't get into it, or into the church for that matter. There are also confirmation evenings, graduating senior projects to be done - all things we want to do, but right now, they're hard. Rico was supposed to write something for Punk for church - it took five days just for him to be able to sit at the table long enough to write for 15 minutes.

School is hard. All of it. Like it shouldn't be so difficult to read ten minutes a day with Tiny, or do a simple math sheet each night. But this week she is student of the week. This means, filling out an 8 page booklet about herself, creating a tagboard poster of her baby photos, and writing in the student of the week journal. Yeah, we're not even getting the ten minutes of reading done, because by the time I pick her up, I'm off to the studio. Good thing she's a solid reader. I threw a bunch of old pictures on the table and a glue stick, hoping the poster holds up. We should also be applying for college scholarships, but we can't. It cannot be done right now. Life is not allowing for that. I'm sorry Punk. I will regret it, I know, but it's just too hard.

Being the mom is hard. Being the one people need to check bedsores, and do tuck-ins, and make lunches, and fill out permission slips, and remember it's garbage night is hard. It's hard to get the flu and know it doesn't matter if you're barfing, kid can't drive herself to school. Navigating around walkers, braces, crutches and other paraphernalia is a little tricky. Picking up tipped over medicine bottles so the dog doesn't OD on those teeny tiny Lyrica pills - that's sometimes hard too.

Watching the love of your life suffer is hard. Seeing him move three steps backward is crushing. Knowing he didn't take his pain meds on time, and watching him cringe his way through dinner is hard. Having to put a giant pillow down the middle of the bed, because I automatically snuggle up to him every night and I don't want to rip his stitches or kick his femur when I sleep is rather disappointing.

Thinking about our "missing year" is hard. It's been about a year since Rico was diagnosed. A year and a half since he's been sick. The world is a good place, but we have missed a lot. We've missed roadtrips, birthday parties, holidays, outings, but mostly we've missed being truly present. I really want to savor Punk's last few months of high school, I want to help Kooka rehearse for her first high school show, I want to hear every detail about art class and recess, and what Tiny sang in music class. But it doesn't happen. Not right now.

So . . . yes, yes it is hard. And I'm sorry if this post sounds more whiny and complain-y than usual. But I did want to be honest. We do try to make the best of it - we really do. But it is also hard. We just believe it'll keep getting better.


Sunday, January 8, 2017

home

There is one more empty bed at Mayo, one less empty bed here. Though he is on almost total bedrest for now - he's home.


Saturday, January 7, 2017

today

Today is the day we can hopefully spring him from the hospital. Right now he is resting and all three kids are at rehearsal of one kind or another. We'll keep you posted.

Thursday, January 5, 2017

huh?

I'm so confused.

I just saw EMT's rolling a guy out of Rico's station on an EMT cart.

All of the beds here have wheels. How could they possibly lift a guy. move him to a new bed, put him in an ambulance and take him anywhere faster than doctors could get to him?

Furthermore - where the hell are they taking him?

 He's in what is arguably the best medical facility on the entire planet. The surgical crew that works on the Dalai Lama, the Pope and the Sultan from Aladdin is an elevator ride to the second floor.

Why are these people leaving - and what in the world is going to happen when they get there?

today

Day 2 of this surgery is looking much better than day 2 of the last one.

For starters, I already know how the couch bed folds out and Rico already knows how to use this thing.



We already know our way to the ice machine and Victoria's Italian takeout (though running across the street in -30 windchill, feels much different than grabbing your raviolis in June).



We know which channel provides the Pawn Stars marathon, and how far in advance to request pain meds. We know exactly how difficult it will be to get him back into the car. We know that an Olympic runner's resting pulse is 37, so no need to freak out when Rico's drops to 49. We know what things to order from the dining menu (coconut cream pie,and the wood fired pizza) and which to avoid at all costs (the tomato soup and mac and cheese).

We know to bring our own pillows and blankets. We know that my cousin is so on the ball that she could literally take over my entire life from feeding my children to teaching my dance classes and nobody would even know I was missing. We know the best time to discover who Rico really is, is those few hours when the anesthesia is wearing thin and the dilauted kicking in.

We know how to put on the squeezey air socks all by ourselves, and he knows I will be furious if he takes them off for more than an hour. We know that we're lucky to be in this huge room at Methodist instead of the teeny-tiny room at St. Mary's.



We know that Dr. Simm is good at his job - the best. We know that the world is a beautiful place, and it makes all of the difference.Thanks for being part of it.




- Posted using BlogPress from my iPad

Wednesday, January 4, 2017

7:48pm

Finally.
Rico is back in his room after 12 hours. The surgery was only supposed to take two, which was a little nerve wracking, but hey, he was unconscious, so it was only me worrying.

One rod, and three screws later he's up in his room. Dr. Simm is my favorite right now.



- Posted using BlogPress from my iPad



It's 1:45. I just got the call that surgery has begun.

Whaaaaaaat?!

I'm totally cool if we actually needed that 6 and a half hours of preparation, but clearly we didn't.

I also realize it's a small price to pay for having the world's best sarcoma surgeon on the job. But for real, I thought he was almost done. His "in the OR" indicator code has been on since 11.

Nearly three hours he's been lonely, scared, likely hungry and without a hand to hold. But at least we are out of the waiting room. I'm in his space, fluffing his pillow, meditating on my favorite bracelet (thanks Jodi), and hoping the surgery takes less time than the waiting.



- Posted using BlogPress from my iPad

how it goes

We left this morning at 5:30 am for a 7:30 check in at Mayo.

It's 10:45 and he's just been wheeled away from me.

He will spend about 90 minutes in pre-op, another 30 in anesthesia. The surgery is scheduled to take about 2 hours. Recovery can take anywhere from 1-3, and then they will bring him back to me, but it will take another 2 hours before he makes any sense.

That's another possibly 9 hours from now.

The surgeon said this is an easy one - no big deal. But from our frame of reference it's almost the same. Same waiting rooms, same sleepless night, same early drive, same teary-eyed goodbyes.

Though I suppose this is easier. Fixing a not-yet-broken leg seems easier than saving a life.

Sunday, January 1, 2017

the jar


It started last New Year's Eve.

We didn't yet know what was wrong with Rico, but we knew this year would be tough and at the very least unpredictable, so we set an empty jar in our living room. An empty jar, with the promise to focus on good things when we could. We called it the jar of happiness.


Setting next to a little pail full of scrap paper and pens, we made conscious decisions to find the good when we could, and make note of it. Tonight we got to review our year - and it's funny, because looking back, it seems like a pretty good one.

There is so much happiness in our lives: Friends and family who fed us and loved us and made us laugh when those things were hard to do for ourselves; having a year of hugs and snuggles and stories and adventures; doctors and caretakers who spent weeks keeping watch over Rico; teachers who know that life isn't all about the test, or the term paper, or the book-in-a-bag, so they fed our kids' souls; church members who reached out to us - the list goes on. But this jar was dedicated to the specifics. Among the joys we relived:
• playing cards with Ken and Loretta.
• lemonade stands
• our Grease family
• hearing Tiny talk into the microphone in front of the whole school during 50 nifty United States
• the two big kids still laughing hysterically over "Emperor's New Groove."
• my family
• watching my mom dance
• a few notes dropped in by friends who stopped to help while we were at Mayo (we just found them)
• my school
• getting into Rock and Roll Revival
• Punk's art scholarship
• Kooka's pirouettes
• sleeping in my sister's room
• I like books
• the surgeon saying "very optimistic"
• dancing with Barry Lather
• Grandpa Vanderhoff
• filming a movie
• Frank and Eric
• taffy
• Harry Potter
• how we love people



Tomorrow we'll empty the jar and start again. We are not disciplined enough to write every day, or even every week, so we do what we can.  I love the sight of our little jar filling with brightly colored jewels of our day to day lives, and crazy as it sounds, dumping that jar onto the floor, felt more luxurious than emptying a piggy bank full of $100 bills. It felt like saving for a rainy day - but saving what was really important.


more surgery

We head back to Mayo this week. More surgery for Rico on the 4th.

They'll be placing a rod in his femur to keep it from breaking. We were told this prior to his initial surgery - radiation destroys the protective covering on the bone making it more susceptible to breakage. The surgeon mentioned that at some point he may want a rod put in.

He didn't mention that the bone could break spontaneously. Like for no reason whatsoever. Like Rico could be sitting down eating a sandwich and his leg could break.

He also didn't mention that when he decided to perform the surgery it would be now.  It's rather ironic, since it seems like we had to wait forever for the first one, and this one only gave us a little over a week to plan for hospitalization and new mobility issues.

We think we have most of our ducks in a row, but always welcome that good mojo and prayers.
Lots of prayers.