Rad Dad magazine feature, and being public (Feb. 27)

rad_dadRecently, the brilliant Rad Dad zine was re-launched as a full-on magazine.  The first issue includes a plug for a certain blog written by a couple parents about their son Lucas:

I’ve come to know Lucas Camilo through the blog his parents create and I am a better father because of it. Hell, I’m a better human because of it.  I felt so angry when he couldn’t view a movie because the theater had no handicapped accessibility.  Then angry with myself when I notice how often I participate in events that don’t either. I was terrified when Lucas was hospitalized and had to be resuscitated but brought to tears by the story of him meeting the first responders a year after the incident. Yes, I’ve been following Burke and Krista, Lucas’ parents, that long because they do an amazing job of balancing the personal story of their son and parenting a child with special needs while also reminding their readers of how they are still part of a lager community; they still work hard to create a more just world.  Burke and Krista and Lucas are the kind of of family I want mine to be.  Do yourself a favor please, read this blog!

It’s a very generous and flattering review written by the founder of Rad Dad, Tomas Moniz.  (And, you may recall that an essay about fatherhood by Burke was published in the Rad Dad book that came out back in 2011 so this plug was not out of the blue.)  We appreciate the plug and also recognize that it’s a little weird to have a personal blog — which we started ostensibly to update family and close friends about Lucas’s early health challenges — become something that would get reviewed in a magazine.  The truth is, many of our posts still focus primarily on Lucas’s day-to-day activities and probably aren’t that interesting for the broader “rad dad” audience.  And yet, at times our reflections on parenting a child with special needs seem to resonate beyond just the people that know us well.

The fact that people still appreciate Lucas’s blog is one reason we keep writing it.  But it’s also for our own personal benefit: the experience of parenting has ended up being quite different than we ever expected and so writing about it is one way to come to grips with the dissonance between those expectations and our current reality, how we see most other families around us, our own experience of childhood vs. Lucas’s… and so on.  We don’t always write eloquently about it, but just acknowledging that it is so helps us be more grounded in the world.

Still, we sometimes feel ambivalence about being so public.  On the one hand, we’re organizers… and most of our adult lives we’ve tried to live in a way that reflects our values, and even promotes them.  Tackling disability, grappling with grief and challenges, celebrating successes — and doing it publicly — fits into that.  On the other hand, there are certain things that are harder to share publicly; and yet once you start down that path it’s hard to know how far to go.  We’ve talked about the fact that Lucas has a hereditary genetic disease, for example, and therefore thinking about expanding the family gets complicated quick.  That reality is a big part of our life but not something we feel comfortable talking about in detail on a blog.  But we have written about feeling isolated around disability, about confronting feelings around death, about money, privilege, and battles over medical insurance coverage.  It’s all quite complicated and interconnected, made more difficult to articulate and talk about publicly because of how closed-minded our society sometimes is to honest conversations about parenting, among other things.

Trying to push the envelope around honest parenting conversations is what Rad Dad is all about… so if you’re interested and live in the Seattle area then join us this Saturday (March 1) for a radical parenting celebration, and some readings!

Rad Dad & Hip Mama Relaunch! SEATTLE – BLACK COFFEE COOP

We’ll leave you with this blurb from the inside page of Rad Dad that describes what its all about:

Being a rad dad is not about being cool. It’s not about being hip, not about trying to be in style, not a trend. A rad dad is about radical parenting. The uncomfortable kind. The difficult kind. Radical as in not complacent, as in conscious and conscientious of our impact on our children, our partners, our environment. Radical as in taking responsibilities for the privileges some of us have, whether we want those privileges or not. Radical as in being cognizant of how we challenge patriarchy (or not), how we impact those around us, how we might depend on unquestioned roles of authority and hierarchy.

27th February, 2014 This post was written by burke 1 Comment

Tags: ,

Sleep deprived and brilliant (Feb. 17)

Lucas was back to sleeping well for a few nights last week, but then fell off the wagon again this weekend.  Last night he woke up around 2 am and never went back to sleep.

Somehow he was in great spirits this morning, including telling an epic tale of just about everything on his mind.  Lucas recently has gotten into hearing us make up stories and trying to make up stories himself (in contrast to many yeaGallimimusrs of insisting on just stories out of books).  He’ll tell a “bald eagle story” or a “gazelle story” that lasts a couple minutes.  But this morning the saga went on and on and on.  At one point in the story the Gallimimus (a dinosaur featured in a book he and Burke read around 5 am) went to visit Papa, then turned on the Christmas tree lights, only to have Papa put it in a container.  A large container with four T-Rexes.  We got out paper and transcribed this much of his story…

The gallimimus ran across the neighborhood.  And then Brooksy went really fast, and the velociraptor ran across the gallimimus.  Just then the gallimimus ran to the caravan, and the gallimimus saw a triceratops at the Burke museum.  And he also saw a glyptodon climbing up on trees.  And just then the velociraptor grabbed the gallimimus.  He was really sad.  He never went to the taxi van with the velociraptor.  And the velociraptor made a mistake… the velociraptor decided to make a mistake.  The gallimimus turned his head around, and he saw a bunch of foxes.  And the gallimimus said Bow Wow Wow.  He looked around at a bunch of pictures for the T-Rex.  And the gallimimus almost got into a crocodile, when the crocodile snapped the gallimimus.  The crocodile went along the beaches, and he looked in his pocked and saw a bunch of needles and he threw them out.  Because the velociraptor and the crocodile and the gallimimus all played together, watching the bald eagle video.  The gallimimus was very busy, that the velociraptor looked up in the tangerine sky.  When he got in the tangerine sky, he looked.  And the gallimimus went to Whidbey Island.

A key to some concepts:

Gallimimus, triceratops, velociraptor, and T-rex: dinosaurs

Glyptodon: prehistoric armadillo-like mammal

Brooksy: a dog Lucas met and loved last year

Burke museum: Seattle natural history museum, with dinosaurs

Taxi van: a highlight for Lucas of our trip to LA was going in a wheelchair adapted taxi

Bow Wow Wow: what the puppy says in the book “Little Yip Yip”

Bald Eagle video: Lucas’s favorite part of our trip to the audubon center on Saturday

Tangerine Sky: Yes, Lucas loves Lucy in the Sky with Diamonds, Caspar Babypants-style

 

 

17th February, 2014 This post was written by admin 3 Comments

Tags: ,

Vacation, part 2 (February 10)

This vacation update is late in coming because we just had an amazing visit from friends here in Seattle, essentially extending our vacation.  More on that visit (and Seattle snow!) soon.  But here’s a bit more on LA…

LAdino2It’s hard to know how to describe anything in our lives with Lucas – sometimes language doesn’t totally fit our experience.  So both of these statements about our Los Angeles trip are true: the rest of our time in LA felt like a perfect, wonderful, “real” family vacation.  And, our trip was hard.  We were really tired by the end, and because of our limited mobility couldn’t do everything we would have liked.  But maybe that part – feeling tired and limited – is just part of what “family vacation” is all about?

The exhausting part had to do with the fact that Lucas isn’t sleeping well.  The morning we departed for LA Lucas was up and ready to go before 4 am, and of course we were along for the ride.  Other nights during the trip he’d wake up many times in the night, needing attention each time.  During the euphoria of travel (and exposure to sunshine!) the lack of sleep didn’t  effect us too much, but by the end at least one of us (the Momma dinosaur) was exhausted.  Besides sleep deprivation, there’s also a lot of effort, time, and energy that goes into setting Lucas’s gear up in a new place, moving pieces around to approximate our home set-up with ventilator, humidifier, pulse-oximeter and other critical pieces of machinery, meds, etc.

But all of that was to be expected, so the more exciting part is that we had a wonderful time.  Not just despite all of the challenges, but maybe also because of them.  The hard parts can make the many sweet moments feel so hugely triumphant.  We often savor small things — making it to a new museum, simply getting our kid down the beach to see the waves — with such joy, and with a present-moment gratitude we wouldn’t have had without disability.   So the joy of everything that vacation means felt luxurious: exploring a new place, tasting and touching and feeling new environments, relaxing into having more time to be with each other, catching up with friends.  A few highlights of the second half of our trip included:

– Watching the Superbowl and having a leisurely dinner with friends/ hosts Walker and Devon.  Lucas spent most of the 3+ hours of the game snuggling with Mies the chihuahua, but each time Burke yelled excitedly at the game Lucas would demand to know “What did the Hawks do?”  He learned new football vocabulary including the words “safety,” “interception,” and “Bronco Busters.”

LAdino1– A trip to the giant LA Natural History Museum.  To our surprise, Lucas was initially extremely intimidated by the T-Rex and Triceratops fossils in the foyer.  It seems that books didn’t prepare him for the life-sized dinosaurs.  He insisted on going home, so we switched gears and checked out more fuzzy mammal-focused exhibits for a while.  Then we found the back door entry into the dinosaur exhibit, promised the that stegosaurus was friendly, and he agreed to go in.  A volunteer approached him and offered him some fossilized dinosaur poop to touch.  It could have gone either way, but he decided to be brave and go for it.  And once he touched the poop, there was no turning back.  We spent another hour checking out huge fossils.

– A visit with Franny and Ilana, good friends from DC who came out to Venice to hang out since we couldn’t make it to their place on the other side of the city.  Although Lucas hasn’t seen them in a long time — and probably can’t remember them from 2 years back — he treated them both like old friends, catching them up on his LA adventures.

– A trip to the Santa Monica pier and time to fly the kite (“just like the Cat in the Hat”), followed by a wind so strong that Lucas asked to go inside a restaurant.  Which obligated us to get a drink and watch the sunset over the ocean.LA3

– On our last morning, we ventured to a public beach a few miles north where we had heard there were special beach wheelchairs for the borrowing.  We had to drive for a while to find the lifeguard station, but thanks to an amazing online accessible-beaches-of-southern-california guide, we had we had what we needed.  Eventually we found a lifeguard who lent us a wheelchair designed to move through sand.  If you’ve never imagined pushing a regular wheelchair through dry sand, try imagining riding a bicycle on a California beach.  Impossible.  But with gigantic tires, dry sand is navagable.  And the adventure was awesome!  It was a bit like the time we took Lucas sledding — he was having a good time, but it’s possible that the triumph of getting him there felt even more thrilling to the two of us.  He definitely enjoyed it too, especially the sandpiper spotting (hence the song at the end of the video).

sandpiper

We ended the trip in general awe of the generosity of friends and the MTM community.  We left the bungalow (where Lucas was ready to move permanently) and drove our wonderfully accessible van to the airport, where we parked it a few hundred feet from our check-in gate.  We hid the key and left it for Nancy and Donald to come pick up.  We couldn’t have dreamed up more perfect logistics, or a better vacation.

10th February, 2014 This post was written by admin 8 Comments

Tags: ,

Vacation in Venice with a Vent (Feb. 2)

We’re in L.A.!  Venice Beach, to be specific.  And after the first three days of vacation, we’re feeling extremely lucky.  And relaxed (mixed with a pretty splash or two of exhaustion).  But the rewards of being somewhere new, a little bit warm, and with old friends makes it so, so worth it.

We flew out of Seattle on Friday morning after weeks of organizing all the logistics involved in traveling, plus traveling with vent.  And it all paid off.  We made it with relatively few glitches and arrived and the bungalow that our friends Walker and Devon had made available – Devon rents the place on AirB&B and its just one block from the beach!  The highlight of our first few hours (for Lucas at least) was hanging out with Lotus Flower and Mies, two chihuahuas who were very gentle and funny with Lucas.

Later that evening we had a wonderful dinner with Nancy and Donald who are part of the myotubular myopathy community.  They live in Huntington Beach and are letting us borrow their wheelchair accessible van for the week which is extremely generous.

On Monday we met up with our friends Ken and Patri and their kids Mateo and Sofia.  We knew Ken and Patri before we all had kids and lived in Brooklyn back in the mid-2000s.  Its been a long time since we’ve hung out so it was great to catch up.  Our destination was the La Brea Tar Pits and the Page museum where Lucas was able to see saber tooth tigers and woolly mammoths… he’s pretty sure he saw the fossils of an Indricotherium too, so don’t tell him that it was actually an ice age camel!  The giant puppet saber tooth was a little too much for Lucas and we had some tears… but the rest of the visit was fun.

In the afternoon we took our second big walk on boardwalk of Venice Beach.  Lucas was loving all the funky characters, and our friend Ilana was along for the journey and showed him the skate park where some amazing skateboarders were tearing it up.  We would have stayed out longer but a winder storm blew in and the sand got overwhelming.  Luckily, there was enough time to hit the infamous “muscle beach” and scope out the old-school roller skate dancers before heading back home.

Today we’re getting ready for the Superbowl and Lucas promises to say “Go Hawks!” many times.  We’re also watching the presidential elections in El Salvador closely and hoping for a big victory for the leftist FMLN party!

(Pictures enlarge if you click on any one of them, then you can scroll through them in larger format.)

 

1. 2.