Wherein I trade-in my swank minivan for a much more practical driving apparatus

good-bye Odyssey
your cup holders will be missed
your ass warmers, too

I did a ridiculously dumb thing last weekend. Something incredibly impetuous. Something truly adverb-worthy.

I made a budget.

And when I was finished with that budget, my husband and I, both ashen faced and horrified, yelled, "HOLY SHIT."

Turns out, like much of America these days, we're living not so much outside of our means, but in, like, Antarctica of our means. We are fresh out of cash. Fresh fucking out. (coughdoctorsandhospitalsandbillsandgroceriescough)

We decided that either A) I have to rapidly sell a book for a cool handful of cash or B) certain cuts have to made.

Well, I'm in the middle of writing two books, but neither are ready to go out on submission, and (alas) books that sell for cool handfuls of cash are not as easy to produce as one might think.

So we decided to opt for choice B: take the State of Texas approach and stop paying for schooling or healthcare for our kids. (Kidding. Uneducated sick kids are a real drag on utility bills). This meant we had to do the unthinkable.

We traded in the swank minivan.

Bye-bye cup holders and ass warmers. Hello, manual gearshift and doors you have to open yourself.

We spent eleventy hours at the car dealership yesterday working out a deal, but, in the black of night, with three exhausted children, a trunkful of crap from the swank minivan, and five Zoom Zoom baseball caps, we drove home in our new Mazda 5.

It is like the younger, dare-I-say – hipsterified – minivan. Like a good waif-like hipster, it has a smaller footprint, both physically and carbon-ly and it's color is "galaxy gray". Also like a good hipster, it has an aftermarket rack (luggage rack. This metaphor is getting unwieldy). It has sliding side doors, seemingly because it wants to say, "I am no minivan! I am a small sporty thing that generously provides unflingopenable doors in order to be a better neighbor to other cars!" It has a 5-speed manual gearshift. And I think there is a requirement that you say "zoom zoom" at least twice while driving somewhere.

It is also half the payment of the swank minivan and will probably use half as much gas.

The kids love it. They are very excited to ride around in the new car, even though the quarters are much closer. There is a LOT less space for flinging crap at each other, though, and when Ike-a-saurus throws his bottle it can easily smack someone in the face or lodge into the steering column, instead of just landing harmlessly on the floor like it used to.

I… am learning to like it. I like that it's a standard, because driving a stick is fun. I like that it has three rows of seats, even if the third row is where the groceries need to go. I like that it has a tiny turning radius and that the steering is really sensitive. I like that the payment is so much less.

I must not mourn the swank minivan, and instead embrace the hipster, uh, driving thing. The Five I'll call it, I guess. I need to make my Five cool. I need to make it swank. It needs some incomprehensible stickers on the back, a political joke, an alien face, something… something… to make it interesting.

Maybe it needs some spinners.

Or I could give it a mustache made out of smaller monthly payment invoices.

Either the way, the budget is now way more HOLY CRIZ-AP instead of HOLY SHIT, and that, my friends is a 30 mpg step in the right direction.

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Not a step back

so much drippy snot
need a dollar for each sneeze
for Christmas presents

Ike-a-saurus has a cold. Technically, he's had had a cold for about a FREAKING MONTH. Longer, maybe. No one else has a cold, though, so this is one lingering sonofabitch. Possibly allergies, but I have to think it's just a viral blech monster that won't go away.

He's been coughing at night, and in the mornings he coughs so hard that he pukes. Yesterday, he puked directly, projectile-y, all over my iphone. So if you call me and I don't answer it's probably because I didn't hear my phone ring due to the fact that the speakers are clogged with regurgitated Boost Kids Essential 1.5. Nice.

In order to combat the coughing and puking, we pulled out ye olde sleeping wedge. Since the trach came out, the wedge has been stuffed in a closet while we try to get Ike used to sleeping in a toddler bed. (Went great the first few days – then he learned he could climb into bed with us. I love the snuggles, but am less fond of being kicked in the face all night.)

When we got the wedge out and set it in his bed, you should have seen his face. It was like he saw an old friend. His eyes lit up, a smile spread across his face and he squealed with delight. He ran right up to it and got the sling part all situated, then he leaned into it and tried to get himself all slung up.

All of this really made me stop and think. This whole time we've been home without the trach, celebrating our new freedom, putting away equipment and I've been so relieved, so thrilled, that I just assumed everyone else felt that way, too. But, of course, Ike wouldn't feel exactly this way. How could I not realize that?

Everything familiar to him – his bed, his machines, his nurses – are suddenly gone. He's adapted well. Really well. So I didn't really think about how much he must miss all of it. I mean, I know he misses he nurses because when we see them here and there he's very excited to say hello. But things like the sleeping wedge, I never really thought about.

So now that he has this cold, things have gone back to "normal" for him a little bit. How funny and weird and kind of sad is that? It makes perfect sense, because this is all he's known. And I feel kind of like a moron that this was a surprise to me. Of course he missed his bed. I would miss MY bed if someone tucked it away and bought me a strange new one.

Hopefully this cold will be over soon. He's been so good about letting me wipe his nose (it's the first time his nose has been this gunky ever! Usually, it all came out the trach. Gross, I know.) And the wedge has helped so much with the coughing.

When this viral bleh monster is over, though, maybe we'll keep the wedge for a bit longer. I think the two of them still have some catching up to do.

beep beep beep

That's the sound of a big moving truck backing into my blog.

I'm debating whether or not I should move away from typepad and onto a free platform like WordPress or Blogger. I am po, and paying for typepad every month seems kind of dumb. Plus, I've managed to do some kind of convulted thing wherein I can no longer edit the sidebars in this template. That's why there's no BRAINS FOR LUNCH up there, and that's why I haven't changed the books or music in, like, decades.

Possibly, I will find a new typepad template and continue to dumbly pay money. I don't know yet. I don't have a lot of time or patience. But I wanted to warn you that things might start looking weird over here.

In other news, Ike-a-saurus now says "ELBOW!" very loudly and proudly. He won't say short, easy words, but he's all about "elbow". Mostly, we all run around yelling ELBOW ELBOW ELBOW to encourage him. If you were to happen upon our home at an unsuspecting moment you might be confused.

In additional other news, my wallet has been missing since Sunday. Have you seen it? It was on the sideboard Saturday night and now it is gone. We have turned the place upside down, checked the trash, recycling, all couch cushions, closets, piles of clothes, bags, orifices, drawers, cabinets, toilets, EVERYWHERE. I'm beginning to think we have pesky house elves or a spontaneous black hole opened up in my living room.

I'm off to write 1667 words. NaNoWriMo waits for no wallet! But ugly blogs might get to butt in line.

Not sure what that means other than I have to go now and write about telepathic space narwhals.

A lovely morning at the milk bank

Yesterday, Ike-a-saurus and I had the privilege to hang out at the Austin Mother's Milk Bank during a press conference celebrating Preemie Awareness Month, the 100th year of milk banking in the US, and the kick-off to a weekend conference wherein a zillion milk bank directors have descended on Austin to discuss milk banky things.

Ike and I were there so that we could share his story and talk about how human donor milk was critical to saving his life. We also got to talk about how the Austin Milk Bank has a policy where they never turn away a sick baby, even if that sick baby's parents are in financial and insurance limbo and can't afford to pay out-of-pocket for the life-saving milk. We got to talk about our loving community and, with all of the community milk he consumed, how Ike really is an "it takes a village" dude on the inside and the outside.

It was a special morning, and I'm so grateful we had the opportunity to share our story. I can only hope that someone out there sees it and decides to donate milk. The supplies are running a bit low over there and that's never a good thing.

We got all dressed up in a fancy duds so that we would look less slobby than usual. And we are thankful to KXAN for editing out the part where Ike took off his pants and diaper in front of the camera.

 

http://www.kxan.com/video/videoplayer.swf?dppversion=5718

And here we are on Fox 7 news, too!

 

http://www.myfoxaustin.com/video/videoplayer.swf?dppversion=5390

If you love in Austin, keep an eye on News 8 Austin today, i think they're running a story, too. We don't have cable, so we haven't seen it yet, but I will keep stalking the web site.

Yay donor milk! Yay Austin! Yay Mother's Milk Bank!

So much love

his roar is silenced
but his memory is loud
sweet, gentle lion

When it occurred to me one day that our family was a member of the Special Needs Club, I wanted to deny it. I think I might have even blogged about denying it. It wasn't a club I wanted to be part of. I didn't want to connect with other special needs parents. I didn't want to connect with other trach parents. I didn't want to know that NICUs and PICUs existed. I wanted to close my eyes and go back to where I had been before. Ignorant. I didn't want to know that children are sick and hurt. I didn't want to know babies die from cancer or suffocate from occluded trachs. I wanted to seclude my family in a tight bubble and wait for it all to go away. For things to go back to normal. For things to be OK again.

And then I realized that it didn't matter how much I denied it. It didn't matter how much I tried to make true things untrue. These were the facts: my son had newly diagnosed special needs. I had questions about children with special needs, how to navigate complicated systems of hospitals and diagnoses and trauma.

I had – and still have – an immense support system, but I needed to be part of the club. I needed to talk to people who have been there. Done that.

So when I stepped tentatively into the special needs club, it was purely for selfish reasons. I needed help. I needed advice. I needed people who could say things didn't have to be normal again because the new normal was OK, too.

I knew that when I joined the club I would make friends and fall in love with their children. I would follow their stories and worry for them and try to offer advice and solace when I could.

Again, purely selfishly, I was afraid of this. I was afraid to make friends and to get to know their kids. I was afraid of seeing others in pain like we were in pain – but even worse, I was afraid of seeing others in even more difficult circumstances. I was very afraid.

But the divide was broached. I met wonderful, selfless, hilarious people. Most of them I only know online. They, and their children, have shown me what it really means to be strong and to fight and to love and to win battles declared lost years ago.

Very rarely do I get a chance to meet these people in person, because the Special Needs club is often a club where the fragility of the kids requires separation from others.

And yet, I met my friend Michelle. In person. And through Michelle I met her son, Lev. A lion of a kid. And through Lev, I learned to stop being such a selfish asshole. Getting close to families of sick children is not a burden like I feared, it is a gift. Knowing little boys like Lev opens your heart to dizzying depths. Seeing their strength, the strength of their families, is something that everyone should be so lucky to experience.

The pettiness of the world slips away when you know a boy like Lev. Each breath, each step, each smile, is a fucking battle of persistence and stamina and sheer force of will. Every grin amidst tubes and wires and doctors is a middle finger to circumstance.

I conquer you, that smile says. I am a lion and you are a mouse, medical establishment. I am a force not easily contained. I roar in your face and show you who's in control. I drink your milkshake.

This morning I got a message that sweet, strong, persistent, amazing, miraculous Lev has moved on from this world of pain and struggle. And as I watch a friend's world shatter into infinite pieces, I want to offer solace. I want to offer a message that Lev changed me. He changed everyone who knew him. He was in this world for a terribly short time, but in that short time he made his mark. An indelible mark in the hearts of so, so many.

Sweet Michelle and Jason and Joss.

Sweet lion, Lev.

Even though you are silent, your roar still echoes. It touches everyone.

And we roar for you. Because of you. With you.

Sweet lion, Lev. Sweet boy.

Thank you.