Thursday, September 29, 2016

first day picture

While everyone else was busy with first day of school pictures, Rico was taking his "first solo venture out of the house without a walker" picture. (Not nearly as catchy sounding, but certainly as monumental).

For those of you who live far away from us - this is how he's getting around 80% of the time.

The walker still exists. He uses it when he goes into large crowds, or rough terrain (kind of like an ATV of pedestrianism). He still has weird electrical jolts in his leg, but we are hoping it's just due to his nerves working extra hard to find their way back home.

He is not happy about the cane or the brace. It holds him back from doing things like hitchhiking through the Rockies, or jumping into Lake Superior in October - so for now I'm cool with it.

Tuesday, September 27, 2016

summing it up

I did not watch the debate last night. 

I couldn't. 

Rico watched, so I peeked in for a minute - but a minute was all. There was simply too much interrupting and too many self-satisfied smiles and too much talk about two people who should really be talking about the rest of the world.

I used to run campaigns. I used to work at state conventions. I got paid to make phone calls for candidates. I went into college as a political science major with two internships already under my belt. It's what I LOVED. I loved the process, loved hearing about new ideas, loved debating, loved making a difference, loved helping people share their ideologies with each other.

But now?


I think it's best for all of us if I just stay in the basement with my ballet shoes. Because now - I just feel like this all of the time:

Monday, September 26, 2016


It's hard to see people you love hurt - for any reason, but for me, it's especially hard when it's preventable.

And by preventable, what I really mean is when people raise their kids to be douchebags.

I'm not talking about kids who make mistakes, or say something unkind because they just don't get the difference between sarcasm and cruel. I don't mean not holding the door for old ladies, or taking the last breadstick at the dinner table (though seriously  - seniority calls last breadstick). I'm not talking about the kind of mistakes we all make when we're trying to figure out life and relationships and our place in this world.

I'm talking about people who are purposely mean. People who like to see other people suffer for their own entertainment. Like when somebody tells your kid,
"Don't sit with us,"
"You realize you're the ugly friend in this scenario,"
Upon seeing someone conversing with a boy with some severe cognitive issues,  "Are you seriously talking to that retard?!"

All three happened to various kids this past week.

My short, pissed-off mom answers would be something horrible - something bitter - something about "How dare you?!" and "Actually this kid has been paid to model professionally, so clearly is not Frankenstein." and "Did you really just say that?! Seriously? (no seriously - that one is inexcusable)"

But my kids are not me (thank God) and keep their cool on the outside.  (Well, except for the last scenario, when said child actually turned around to say, "Shut the hell up" and continued the conversation with the new kid).

CLEARLY there are moments when a "Shut the hell up," is warranted,  but for real? Is it that hard to just be nice?

Sometimes I feel like I need to move to a commune. Not one where they grow their own kale, and have sunrise yoga and pedal bikes to create their own electricity - just one where people say "please" and "thank you" and share their good vibes - and their Cheetos.

Tuesday, September 20, 2016


Last night Rico and I decided that no matter what we heard today, this would be our mantra, "Life is good. We're OK. No matter what happens, we got this."

It's taken us through the past year relatively unscathed (well one of us more scathed than the other).

But today, the scan said "clear", and we breathed the first real breath we've had since last September.

Kooka smiled and her shoulders relaxed, Punk hugged us, and Yoda flopped down on the floor and said "Whew,  I'm glad somebody finally told me because I've been waiting all day."  Even classes at the studio stopped what they were doing and cheered for Rico.

Of course we will not laden them with the fact that there are 19 more of these to go before we are out of the woods. It's real, but there is no need to dwell on that right now - or ever. There are still months of rehab, lifelong mobility issues, but for now, life is good.

Today, life is really good.

Monday, September 19, 2016


Scans today.
Results tomorrow.

Wednesday, September 14, 2016


So Rico and I were dropping some things off at the studio last week, and on our way home, we saw these guys - preachers they call themselves, standing on a street corner near downtown.

They were standing on literal soapboxes, wearing go-pros around their necks. They were pretty heated about something  - shouting at a group of kids, in the parking lot, telling them they were going to hell, asking where there parents were. His direct quote was, "What kind of world are we living in, where parents don't know where their kids are at this time of night? WHERE ARE YOUR PARENTS??!!"

Let's be clear, it was 7:30 pm, these kids were between the ages of 15 and 19 and were standing next to the whole foods co-op. It's not like my first grader was down at the VFW smoking cigars at midnight -  it was a perfectly respectable place to be - except for the yelling.

Where were their parents? Who knows? Who CARES? These kids are old enough to drive, babysit and get drafted, they should certainly be allowed to loiter in the parking lot with their hummus and organic almond milk for a few minutes.

But this group of men would not let up, and I saw kids I knew there, kids I taught, kids I went to church with, kids who are friends of my kids -  and I could see this man's face turning purple with rage, spit flying from his mouth, sweat covering his shirt, as he kept screaming, "Where are your parents?!"

And you know - I'm a big fan of the whole"it takes a village" philosophy, so I see a friend of mine, and we decide that we'll go over there and see what's up, maybe make sure the kids are OK.

Holy Hellfire and Damnation.

We no sooner stepped onto the grass near those kids when the preacher started going off on "women" calling us jezebels and harlots. For real?

I mean, maybe we were just bringing some chips for that hummus - but he didn't care. We were going to hell because we were on the wrong side of the parking lot.

He actually posted this video to his youtube (I saw it through a friend of a friend) according to the video he's "never heard kids being so disrespectful, I mean this 17 year old child walked up to me and said things I've never even heard a young man talk like." He posted another on Facebook called "hating the gospel."

He says videos don't lie.
But neither do they tell the whole truth.

This group of middle aged men continually mocked a kid with a growth disability, calling him a baby asking how he could know anything if he was an infant (the kid is 19, and was standing there silently). They only captured the faces of the kids across from them, not the angry glares and gestures from the men. He called their parents names, called them whores and demons.

The worst part of this whole scenario is this - while this "man of God" stood screaming his version of  "the gospel", this is what the kids were quietly whispering to each other:

"I don't think Jesus wants us to hate people - even them."
"I think God wants us to do better."
"Why does this guy get to speak for God? I thought only Jesus could do that?"

THAT'S what these "heathen" kids were talking about, as he spat in their faces.

Certainly there were a few yellers, a few things that shouldn't be said - but really - who could blame them? And yes, they stood there (quietly for the most part) waving a rainbow flag, standing for themselves, their friends, their family members, when they could have walked away. But they were calm, they were peaceful, they were reminding themselves not to judge others.

That guy might have been "preaching" it, but those kids - those kids were the ones living it.

"Do not judge, and you will not be judged. Do not condemn, and you will not be condemned. Forgive and you will be forgiven." Luke 6:37

"But the wisdom from above is first pure, then peaceable, gentle, open to reason, full of mercy and good fruits, impartial and sincere." James 3:17

"For God did not send his Son into the world to condemn the world, but in order that the world might be saved through him." John 3:17

I don't know what all of those people believe, nor do I think for a second, that a single mind was changed that night. And, heck,  we may never know where those kids' parents were - but I do know one thing - their children are people to be proud of, thoughtful, kind, and brave enough to stand for what is good.

Tuesday, September 13, 2016


Next week are Rico's scans.

Three month scans.

June, July, August, September.

They told us not to expect much, that things always look a hot mess during the first set of scans, because everything is still swollen inside and healing.

But still - scans.

We just don't know how to feel about it.

Wednesday, September 7, 2016

first day

My kids looked like this on the first day of school:

 But it felt like this:

It's the last time Punk will stand in front of that door for a first day of school picture. The last time he'll be forced to read his mother's rules stuck to the back of the door - (a reminder to work hard, be kind and say thank you - I have no such delusions he'll be posting it in his dorm room). Even for Kooka there are only three more of these. I am grateful for our public school system, I really am, but I also secretly resent that school steals my kids from us, from each other. I am constantly reminding myself, that they are not "mine" they are their own people, who need to be part of the greater good.

School would be great if it ran from like 10-2 Monday through Thursdays, with optional extra curriculars from 2-3. Throw in confirmation on Wednesday, a dance class here and there, the occasional, Homecoming/Prom/Football game and I'd be set.

But for now, all I can hear is the tick, tick, tick of the clock. 

We better make this year a good one.

Monday, September 5, 2016


I suppose the worry will never go away. A fever, a rash, a lump, a bloody nose - none of it will ever feel incidental. Sometimes I wonder if we will ever really sleep again. We spend most of our nights tossing, turning and reaching out every few hours, just to make sure the other is there.

Falling is our latest worry.
It happened the other night.

Not a huge one, not down a flight of stairs, or off of the roof or anything. Just one second he was standing up, the next second he wasn't.

He's been given three different braces by three different specialists - blessedly covered by insurance. This is not including the funky socks and ace bandages - those are a whole different issue.

One of these braces is a full leg outfit. Have you ever dipped your finger into warm candle wax and waited for it to cool? It's something like that - but the whole leg is encased in plastic, and a few aluminum hinges. The one time he put it on, he ambled around like the newly oiled Tin Man from Oz, before we both declared it dangerous - much more likely to cause a fall than prevent one.

Cost for brace: $4,000.

Time worn: about 45 minutes

Brace number two was jaunty fleece number with cobalt blue fabric, velcro wraps with aluminum strips running down both sides. It's the type people use when they've had recent knee surgery, or are just biding their time before they can get an MRI.  It was comfortable enough - when it was on.  The design of a human leg is that it's larger on top and gets narrower toward the ankle, so even if we wrapped it tight as a tourniquet, it was constantly sliding down, which again, led to more instability.

Cost for brace: $200

Time worn: about 2 hours

Brace number three is a $3,000 black mechanical set up, with locking gears and lots of straps. It seems to be the best so far, and allows Rico to walk with a cane instead of a walker, so for now, we'll take it. Because one less worry for him, is priceless.

Sunday, September 4, 2016


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Saturday, September 3, 2016


I remember the moment I started keeping track of all of his firsts: October, 6, 1998. He wasn't even born, but still, was everything I'd ever wished for.

But today, today felt like the last of the firsts.

His first college visit.
About 60 hours until he starts his senior year of high school.
He is funny and kind, loyal and loving, crazy smart and insanely talented.

And I miss him already.

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