Lucas Camilo

Recently, 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.

Krista and I were talking recently about wanting to write more reflections on this blog.   Many of our posts these days are rather straight-forward updates about Lucas’s life (which people seem to appreciate), complete with cute pictures or videos (which people definitely appreciate!)  But the longer, more thoughtful posts that grapple with disability and parenting have become less frequent… alas, as many of you know, it’s hard to keep consistent with a blog.

Part of the challenge of a parenting blog is figuring out how much to make public.  And then there’s the fact that it’s a shared blog – we’re not always in the same place emotionally and sometimes disagree about what to publish.  Mostly though, it’s a matter of time and prioritization.  We both love to write, though, and we were honored recently that a review of Lucas’s blog was written by the publisher of the new Rad Dad Magazine (which is about to premiere in the next month after having been upgraded from a longtime zine).   So here’s my attempt at getting back into it.

Scenes from the holiday month (note: we just took our Christmas tree down so I feel justified in publishing a fragmented review of “the holidays” on January 15).

** The 3 ½ hour drive from Portland to Seattle isn’t always easy for Lucas; last year he got so tired, uncomfortable and upset that we had to pull over in Tumwater, just an hour from Seattle, and spend the night.  This year we planned in advance and found a quirky “resort” 6 miles off I-5 and decided to stay the night and have an “adventure.”

And an adventure it was.  We were the only people staying at the Silver Lake Resort, and the caretaker had to be pulled from a family gathering nearby to let us in the door of room #2.  But the weather cleared up and suddenly there we were, watching a beautiful sunset at the base of Mount St. Helens on the porch of a run-down hotel overhanging the lake.  After the sun went down we tried to find a place to eat dinner but nothing was open… so we got some supplies at the gas station convenience store a few miles away and whipped something together in our room.  The next morning we got up earlier and took a mile-long hike along a wheelchair accessible boardwalk trail right as the sun was burning through the morning fog.  It was spectacular.

As Krista remarked the next day, our Silver Lake adventure is one of those beautiful things that only happen because of disability.  We’re not big vacationers, but were it not for Lucas’s disability its likely we would have taken a longer journey during our winter break.  Rather, for the fifth year in a row we remained within a 150-mile radius of our home during the break.  And that’s just fine by us.

** We stopped in Olympia on the way back from Silver Lake.  We found a great fair trade café and store called Traditions where Lucas was able to lie down, rest and play with blocks while we got a snack.   Two people started watching us intently from across the room and after a while they approached with a small gift for Lucas.  They asked about his condition and we explained that he has a muscle disease.  One of the two people remarked repeatedly how sorry she was, how bad she felt for Lucas and kids like him, and how they would pray for him.

It’s not an unusual situation, and though on one hand its awkward (and often annoying) to been openly pitied by someone you don’t know, on the other hand I do sometimes appreciate people who actually say what’s on their mind related to Lucas instead of immediately turning away (also a common response).

But here’s what I’m really left with: if the couple had actually been paying attention when they were staring at us they would have noticed how much we smiled, laughed, enjoyed being with Lucas and making him happy.  Instead of apologizing for how hard our life must be they would have been moved by the love that surrounds Lucas.  It’s something that makes me proud and keeps me going even when things related to Lucas’s life get really tough.  We are a happy family.  It’s possible to both grieve what’s difficult in our life – the fact that our son may not live a long life, that his disability prevents us from doing a lot of the things that other families do, etc. – and still bring joy to much of our experience together.

** After lamenting about never being able to take a full-on vacation…  we planned a full-on vacation!  We’re going to Los Angeles for 5 days at the end of the month, the first-time that Lucas will get on an airplane for a trip involving nothing other than pleasure, seeing friends, and leaving cloudy Seattle for sunny southern California in the dead of winter.  (He has flown twice before: once when we moved across the country from DC in March 2012, and a second time to go to the MTM family conference in Minneapolis last summer.  In the latter case we drove 2 miles from the airport to a hotel.  It was an amazing trip, of course, but we never left the hotel conference area.)

I’ve never been much of a vacation guy but its already been fun to plan this trip for Lucas.  We quickly figured out that the Museum of Natural History now has one of the largest dinosaur exhibits in the world… and Lucas currently is obsessed with dinosaurs, not to mention wooly mammoths and saber-tooth tigers which we’ll also be visiting at the nearby La Brea Tar Pits.  Of course, we’ve had to explain repeatedly that we won’t be seeing actual dinosaurs but rather fossils – which Lucas is perfectly happy with as he seems to like the way that “fossils” rolls of the lips.   We’ve also secured a place to stay through my friend Walker that is an accessible bungalow a few blocks from Venice beach and right across the street from a dog park.

I’m looking forward to this as a trip for us, too.  Krista and I haven’t taken a big trip together (other than our hotel-bound Minneapolis journey) for 5 years, since we travelled to Colombia in the spring of 2009 a few months before Lucas was born.    It’s kind of funny, but I’ve been studying up on LA history, loading our Netflix with films about LA, looking at maps and doing research as if we were flying halfway across to the world to explore a new country when in fact we’re going 2 hours to frigin’ Los Angeles!  And who knows, maybe Lucas will get sick or a piece of his equipment will conk out and we’ll have to cancel the trip… it won’t be the end of the world.  But like our one-night Silver Lake adventure last month, I realize once again how being Lucas’s dad has taught me to appreciate the little things, and feel deeply fortunate at how much we really have.  We’re planning family trip to LA – how awesome is that!

(Burke writing) We’ve been trying for a while to post something about all the cool things Lucas has been up to the last month… and by extension, all the cool things we’ve been able to do with him lately.  That particular post is in draft mode as we’ve been too busy to finish.  But in the meantime I feel like talking about something else that’s been on my mind related to Lucas.

You see, despite all of his amazing feats and progress, it’s still really hard to communicate with Lucas these days.  And sometimes when friends visit who have read all of our positive, uplifting blog posts — but haven’t met Lucas or seen him for a long time — we want so bad for there to be a good interaction, and they want it too… but, well, Lucas is a bit ambivalent about the whole thing.  And that can be hard.

We’ve talked before about his unique way of communicating: he rarely responds to direct questions unless repeated multiple times; he won’t talk about feelings or emotions; he seems uninterested or unaware of the “why” questions that most kids his age ask repeatedly; and more often than not he’d just assume get to reading a book or doing a puzzle.  All of this makes it very difficult to have an actual conversation with Lucas, beyond a few back and forths that often feel pre-rehearsed.

Sometimes we forget about all of this because Lucas is so smart and so funny… and overcoming so many obstacles to even communicate at all!  And, his ability to communicate really has improved a lot of late.  But still there are times its frustrating because we know that he has so much potential to interact and yet for some reason chooses not to.  A few times over the last few weeks this has come through when we’re with friends who really want to get to know Lucas.   They ask him questions and do their best to make a connection based on what they know about him.  At best, any conversation has to be facilitated by the two of us; more difficult is when even our facilitation doesn’t break through the apparent communication barrier.  In those cases, we acquiesce, letting Lucas turn to the “other side!” as he demands (with his head pointed away from the action and toward the backrest of the couch) so that he can read a book, do a puzzle, or play with the iPad “by yourself!”  (He still prefers using the second person “you” when referring to himself which also makes for tough communication.)

It recalls up for me some really poignant, though hard, conversations that I had recently in a special needs dads support group.  Granted, the kinds of disabilities our kids face are all over the board, and yet at the same time there are some intense commonalities of experience.  A number of dads with older kids talked about how at a certain point it became apparent that their special needs kids (in contrast to their typically developing kids) weren’t getting invited to many play dates, or birthday parties, or activities that involved bringing families with young kids together.   And that was hard.  Krista and I feel very fortunate that we have a family and community here in Seattle that love Lucas and seek to include him.  But the fact of the matter is, he’s hard to include.  Often that’s because of his wheelchair, and trach, and vent, and suctioning, and all the gear we have to lug along to even get to a gathering.  But it also has to do with his communication and the challenge, and sometimes awkwardness, of including him.

Part of our emotions around this go back to the recent passing of one of Lucas’s MTM buddies, Matteo.  As we shared in our last post, his parents have been so amazingly open in writing about their son’s death, and displayed such intense love for him, that every time we read something on Facebook it brings a flood of emotions.  His dad’s eulogy, posted yesterday, hit me hard… not just because I could imagine myself having to write something similar about Lucas sometime in the future.  But also because it struck me how much Matteo was like Lucas… quirky in his communication, very difficult at times to read and understand, and yet deep down, an amazingly vibrant human being.  Perhaps the tragedy is that too few people get to really know the likes of Matteo and Lucas.  In that sense, Krista and I, as well as Donald and Nancy (Matteo’s parents), are extremely fortunate.  We spend so much time with the beautiful enigma that is our child that we get to truly know all that he encompasses.   And still, its hard to know that others aren’t quite so fortunate…

On Sunday we took Lucas to see some scruffy, fantastic vaudville-esque circus performers in Volunteer Park.  They held his attention for hours, and he was especially into the jugglers.

The next day he woke up with a little cold, but it didn’t seem like anything serious, so we stuck with his regular full schedule of speech therapy, walks, etc.

So we were surprised on Tuesday morning when Lucas woke up having trouble breathing, even after we’d gone through all our usual tricks (suctioning, patting his chest, moving him around, suctioning some more).  He started looking grey and was flaring his ribs as he sucked for air, so we pulled out the oxygen tanks we keep around for emergencies.  And when even that didn’t work, we packed up a pale Lucas and hurried in to the emergency room.The short story is that he has rhinovirus (the common cold).  There’s nothing to do except rest, hydrate, and use a machine called the “cough assist.”  It manually forces air in, then creates a vacuum so his lungs make a coughing action and bring the mucous up and out — an action that Lucas’ muscles aren’t strong enough to do on their own.

It didn’t take long in the ER to figure all that out, but the docs insisted on keeping him at the hospital for a night just in case things got worse.We felt bad (and the docs helped reinforce this) that we forgot to try using our cough assist machine at home.  But Lucas has never had anything like this before, so when we’ve used the machine in the past, it didn’t do much.  So it didn’t occur to us in a time of urgency to use a machine that’s never really worked for Lucas.  Turns out he just didn’t have the right kind of cold to make it useful before.

It’s pretty near amazing that Lucas has made it almost four years without this problem of a common cold with mucus deep in his lungs.  But that knowledge felt like little consolation as we tried to sleep in the ICU Tuesday night with nurses, residents, fellows, respiratory therapists, and the cleaning staff coming in just about every hour all night long.  Our nurse had assured us that they’d let him sleep — hate to see what they do to the kids who they aren’t “letting sleep.”
Lucas thought the hospital was pretty great.  He had a big screen TV, and lots of people coming in and out who he could chat with.  He especially hit it off with the respiratory therapists (RTs).  While we were out of the room he tried to convince one RT to read him his favorite book.  When we came back and explained what he was requesting, she sat down and read him all of Hiccup Hippo.

While Lucas is doing fine — home and in great spirits, though he’s still recovering — the two of us are worn out from the whole thing.  Tuesday morning was stressful, not just because it was hard to see Lucas in distress, but also because we’re used to being a smooth parent/medical-caregiver machine that can deal with whatever he needs.  But on Tuesday morning we read his signs differently.  And then going in to the hospital is generally awful because although we know what he needs or wants at least 97 per cent of the time, hospital procedures require us to either relinquish most of our power to care for him, or else stay extremely alert and able to argue and advocate for him at every single step of the way.  Each time we go in there are new doctors, so we have to go through some of the same arguments we’ve had before.  They notice the leak in his trach and want to put in a cuffed trach.  We explain that if they do that they take away his ability to talk, and besides, he does fine with the leak.  They say they could ventilate him better.  We say he’s been healthy and well ventilated for four years with a leak, and we like to hear his voice.  They think they know better than us.  We think we know better than them.  And so, while we’re on our last half-nerve, having started our morning at 5:30 am with Lucas in distress, we’re forced to either back down and let them do what they think is best (with the trach or a dozen other procedures) or stand our ground and try to appear reasonable, articulate, and informed so that we can convince the doctors to do what we are sure is best for Lucas.

It’s not all a stand-off, but it sometimes feels that way.  Especially when we’re not just negotiating with one doctor, but up to four or five at a time.  At one point we had an attending pulmonlogist, a pulm fellow, a pulm resident, and an attending ICU doctor all pretending to have a conversation with us about what was best for Lucas (in this case, whether or not he needed to be in the ICU), when it was clear that we were negotiating with people who were not going to change their position.  The negotiations ended already because we got concessions — they agreed we could discharge directly from the ICU (meaning a faster path to home) and that we could do most of his care in the ICU (though they pointed out that they didn’t really have say over many things that were just hospital procedure.)

Lucas came home Wednesday morning and of course we’re thrilled to have him home.  However, Friday morning we went back for a chest x-ray and our pulmonologist says things are looking worse than two days prior.  This is likely just the normal trajectory of the virus — getting worse before going away.  And today he’s in such good spirits, and with much less need for the cough assist, that we might just take him to a party this afternoon.

This morning we woke up in our hotel room at the Best Western in Minneapolis to the sound of Lucas moaning and calling out for help.  After a half hour of suctioning, nebulizer treatments, and more suctioning, we started to face the reality that Lucas was getting sick.  Our plans for another powerful day of family conferencing – not to mention our return flight to Seattle – flashed before our eyes.  We started making contingency plans and bracing for the worst.  And then all of a sudden Lucas smiled and said “you want to play the I Spy game!”.  Just like that he was back to normal and we were off to breakfast.

It’s hard to describe how important being at the myotubular myopathy conference has been for us and all the other families here this weekend.  Sure, there was lots of fascinating and groundbreaking medical research presented to the group as part of the rather remarkable progress that has been made towards a treatment for x-linked MTM.  But most importantly for us, being at the conference was about connecting with, sharing, and learning from other families of kids born with MTM.  Being parents of a child with a disability can be very isolating, even more so when that disability comes from an extremely rare gene defect that causes the child to be medically fragile.  There’s just a lot of stuff you deal with that no other parents can really understand or relate to.  And then you walk into the 2013 MTM family conference and look at the wheelchairs rolling all around, and hear the whirr of multiple suction machines and the annoying beep of an errant pulse odometer… And, as conference organizer Erin Ward said during the opening, it feels like home!

As we watched another couple switch out an oxygen tank – gracefully and in perfect sync with each other – or a father gently suction his son’s trach while carrying on a conversation, or a mom expertly pick up her 2 year old with low muscle tone, taking care to maneuver around the vent circuit, we thought “that’s us!”  Discussions about highly specific technical and medical information felt completely natural and often totally exciting, and we learned as many tidbits from other families as they hopefully learned from us.  In a conversation on Saturday afternoon that we facilitated, moms, dads and siblings talked about challenges and triumphs related to travel, school, nursing, family relationships, and other topics.  At every step of the way, the connections we made felt deep (especially given how little  time we had known people) and empowering.

We went through some ups and downs over the course of the weekend, and dealt with tough emotional and logistical challenges.  But in the end we are so grateful to have been able to attend the conference as a family.

Lucas sings “Take Me Out to The Ballgame!” (He got a little nervous…)

Krista is in Washington DC this weekend and so it’s just me and Lucas.  We’re missing her but also enjoying ourselves in the good weather.  My dad (aka Papa) is coming over today and we’re going to have some quality boys time.  Lucas doesn’t like college football so I guess we’ll have to crack a couple cold ginger beers and watch “Polar Bear Polar Bear” on youtube repeat…

Yesterday Lucas and I spent the whole day alone together without interruption (except for a 45 minute occupational therapy visit in the morning).  It was both glorious and challenging.  By the end of the day the house was a minefield of crayons, markers, books, banana-stained rags, medical supplies, toddler clothes, dirty dishes, and more… I was so tired that I didn’t bother to clean up, just collapsed into bed to watch a movie once Lucas fell asleep*.

Though I was tired, I also felt really good.  Lucas was in a great mood, one of those days when the longer we spend together the better it gets.  In the afternoon Lucas was being especially hilarious, pleasing himself with simple things like removing and replacing the cap on the little insect-catcher.  After I had released the honeybee, spider, and lavender leaves, he would  look into the empty plastic container and say “No one’s in there!”  By the time I got the camera out he had settled down, and sometimes video just doesn’t do justice to Lucas’s ridiculous sense of humor.  But here you go anyway:

A day alone with Lucas also brings home the tough reality of caring for a child with acute special needs: your options are limited.  Krista has more experience with this since she spends more time with Lucas, and has been home alone various times over the last year especially (because of my work travel schedule).  She tends to be more adventurous, pushing Lucas to take excursions even when it’s just the two of them, fearlessly loading him and all his gear into the van for a trip downtown to the aquarium, or making plans to meet up with friends.  When she’s gone I’m inclined to hunker down at home with Lucas, since getting out and being social AND taking care of Lucas alone is complicated, to say the least.  We’re both fortunate to have a lot of support from family but nevertheless it’s tough.

Yesterday was so beautiful that Lucas and I couldn’t resist taking a walk in Seward Park, and then spending a few hours playing on the grass in the back yard.  The best part of the day, though, was lying down in bed together to watch the first half hour of “Finding Nemo.”  It’s really the only movie that Lucas will watch more than 5 minutes of, and last night he was enamored with the fact that it was Nemo and his dad swimming around together.  Each time there was a scene involving Nemo and Marlin Lucas would exclaim “Nemo and his daddy!” and then point right at my chest, with a huge smile on his face, and say “I’m a daddy too!” (he’s still got a little pronoun confusion).  By the time he fell asleep – and I took one look at the bombshell that was our house and decided to jump in bed rather than clean up – all I could think about was how damn happy it makes me to be Lucas’s dad.

(* Note: the movie that I ended up watching was Restrepo, an Afghanistan war documentary which I highly recommend, yet may seem like a strange choice given the feel-good, sentimental-parent mood I was in at the time.  Alas, it’s on my short list of “violent movies that Krista probably won’t watch with me”, and as we near the 11th anniversary of that war’s beginning it seems important to remind myself, in a visceral way,  how brutal and misguided war really is.  Perhaps it goes along with the sentimental parent thing after all, in so far as I long for Lucas to be able to live in a country that doesn’t dedicate a huge chunk of it’s shrinking budget to funding death and destruction… But I guess that’s another blog post.)

As some of you may know, a new book was just released called “Rad Dad: Dispatches from the Frontiers of Fatherhood” and in it is an essay by Burke.  Here’s a post about the book…

Last winter we organized a public event that featured parents reflecting on having children with disabilities, and out of that I was connected with the founder of Rad Dad, a small zine edited by Tomas Moniz which explores parenting ideas and ideology, mostly from the perspective of dads.   The concept was really exciting to me, for as I previous wrote, it’s been hard at times to track down other dads (especially of kids with special needs) who are a) as engaged in shared parenting as I try to be, and b) bring their politics to parenting as it relates to disability, gender roles, health care, etc.  Subsequently I submitted a revamped version of a blog post to Tomas for consideration in the Rad Dad book he was co-editing with Jeremy Adam Smith (who wrote the Daddy Shift and whom I talked about previously).  The piece was accepted and six months later the book has been released.  Check it out and pick up a copy from the publisher or your local bookstore.

As the promo explains, the anthology comes out of previous publications by Tomas and Jeremy which:

“have explored parenting as political territory… pushed the conversation around fathering beyond the safe, apolitical focus and have worked hard to create a diverse, multi-faceted space to grapple with the complexity of fathering.  Today more than ever, fatherhood demands constant improvisation, risk, and struggle… Rad Dad is for every father out in the real world trying to parent in ways that are loving, meaningful, authentic, and ultimately revolutionary.”

Both Krista and I have done a lot of writing about Lucas and the challenges/wonders of parenting a child with special needs.  The piece I submitted for Rad Dad isn’t the most complex, or amusing, or emotional thing we’ve written, but it does get to the heart of a paradox that we’ll continue to confront in the years to come: celebrating Lucas for who he is while at the same time wrestling with the “weighty” challenges of severe disability.  It’s a theme that is repeated throughout the hundreds of posts we’ve written for this blog over the last two years.  At the time I wrote the essay that became “Upsidedown Lucas” for the book I was thinking a lot about Lucas’s rapid weight gain and what that meant for him and for our future given his extremely low muscle tone.

You should really buy the book and read the whole thing but if you want you can read my chapter by finding it on Google Books (my essay starts on page 51).  Our copy should arrive today so I haven’t actually read much of the book yet myself.  But I’m especially excited that it includes an essay by Raj Patel (an amazing writer and activist around food justice issues) as well as an interview with Ian MacKaye (founder of the seminal DC punk band Fugazi who also happens to live right up the street from us).

Finally, I wanted to mention that I really appreciated the response I got from my first reflection on dadhood that we published last May on Lucas’s blog.  I look forward to continuing the discussion now that the Rad Dad book is out, and I encourage people in DC to come out to a reading on September 23 at St. Stephens Church – details coming soon.

You may assume from the title of this post that we’re not going to use the usual “we” voice of Lucas’s blog… and you’re right!  Perhaps this is the beginning of more blogging in each of our personal voices, something we’ve talked about doing for a while.  So here goes Burke with part 1 of his blog-post-turned-essay…

I’ve been wanting to share some reflections about being a father that build on the parenting resources – including “dad” resources – that have been inspiring to both Krista and I as we continue to explore our roles as parents and caregivers of Lucas.  From the beginning we’ve felt strongly about equality of responsibility in the raising of children; we’ve also been passionate about maintaining our political and social values through the way that we raise Lucas.  However, how these things plays out in practice can sometimes be a challenge, and it often occurs to me that I don’t always live up to my own ideals when it comes to parenting.

In part for that reason, it’s been exciting to find books, websites, and zines that articulate – better than I ever could – the challenges and virtues of shared parenting from a dad’s perspective, not to mention a lefty political perspective.  Over email I’ve gotten to know two dad writers in particular – Tomas Moniz, the editor of the amazing zine Rad Dad (more on that in part 2), and Jeremy Adam Smith, the author of The Daddy Shift and founder of the blog “Daddy Dialectic”. Thanks to both of them (and to Jen Silverman for connecting us!) for opening up the world of “radical dad” resources, which I look forward to continuing to explore.

In fact, when Krista was pregnant I sought out literature on the early stages of parenting from a dad’s perspective.  Perhaps I shouldn’t have been surprised to find that most of the books out there for expecting dad’s are slapstick how-to guides based on cliché male stereotypes – “how to change a diaper at the ball game” – and lamentations on the end of sex/freedom/the good life.   Needless to say that wasn’t what I was looking for.  So it wasn’t until after Lucas was born and we had read just about all the Preemie books you could imagine that I started again looking for dad resources.

Which brings me to my first disclaimer: raising a medically fragile child with a disability is very different than raising a typically developing child.  Early in Lucas’s life, during the post-Preemie/MTM diagnosis stage, I couldn’t really handle reading stuff about by parents of kids without disabilities.  Even if they shared our politics and philosophy about parenting, many of these reflections were based on life with a child who would never have any trouble doing the “basics” (eating, breathing, talking, walking, etc) – things that we most certainly can’t take for granted with Lucas – and it made me sad.  I’ve mostly gotten over that but the reason that My Baby Rides the Short Bus was so powerful for both Krista and I is that is written entirely by parents of kids with special needs.

The Short Bus anthology became our best support resource in the first year of Lucas’s life, but I couldn’t help but notice that only two of the nearly 40 writers featured in the book were fathers.  (Another anthology of special needs memoir writing called The Elephant in the Playroom is not as overtly political as Short Bus but around 25% of the essays are written by dads, including a beautiful story called “Dream House” about a boy who uses a ventilator).  As I joined special needs list-serves and parent-support forums I found that almost all of the people posting were women.  Either most dads were taking a back seat in dealing with their child’s disability or they just weren’t writing about it.  But certainly there must be more than a few dads out there writing about parenting from a non-macho perspective?

It was then that I ordered The Daddy Shift by Jeremy Adam Smith.  The book delves into the transformation that has occurred as more dads take on the role of primary caregiver and more moms take jobs that make them the primary breadwinner.  It’s got some great history that explains some of the sociological changes around gender roles in parenting over the course of the last century, and it also gets into specific stories of dad’s who have chosen to stay at home with their children.  The book tells the “positive (but complex) stories of men and their partners who are building a new alternative… in hope of making the alternative more visible, and viable, to more people.”  He continues:

“If this map has a destination it is a world in which gender roles are more flexible and the division of family labor is negotiated, not imposed.  It is also a world in which public policy supports the choices of twenty-first century families by providing paid leave to both parents as well as high quality day care, universal health care, and protection against discrimination, among other programs that have been shown to fuel father involvement in family health.”

In April of last year I went back to work after taking some time off from full-time employment shortly after Lucas’s birth.  At that moment it happened that I was more focused on getting a job and Krista was more excited to stay at home with Lucas.  It could have gone the other way, and as we consider future transitions (moving to the West coast, etc) it’s likely that I’ll soon be taking a shift as a stay-at-home dad as Krista spends more time in school or working.  So even as we superficially have maintained traditional gender roles through our current arrangement, these ideas really resonated.

In fact, Krista and I are committed to shared-parenting and to continuing to build on the alternative that Jeremy writes about.  I think a lot of young couples are in some way committed to such an ideal, but like I said at the beginning, it’s challenging to make it play out in practice.  The fact that very few dads participate in online parenting/special needs forums is perhaps a testament to how far we’ve got to go towards achieving that ideal.

I should also add that dads probably feel excluded sometimes from parenting spaces because such spaces are set up for moms; one assumption that pervades our society is that moms know best when it comes to their children’s needs. Though there’s good reason for this, I often get frustrated when certain doctors, nurses, administrative people, etc assume that Krista is the only the person to talk to when it comes to Lucas.  People will call and ask for her and when I say she’s not home, prefer to leave a message rather than talk to dad, who they assume doesn’t know much about what’s going on with Lucas.

At any rate, under our current arrangement I spend a lot of time with Lucas during the evenings and over weekends, when Krista often has classes and workshops; but we also try to divvy up domestic work, dealing with health issues, making appointments for Lucas, etc, which The Daddy Shift rightly explains is just as important to shared parenting as caregiving (note that I say “try” – Krista will have to weigh in on how successful we actually are.)

Here I should make another disclaimer: because I have inherited wealth our situation is distinct from the typical household referred to in the book, which depend on at least one “breadwinner” to support the family.  As occurred for the first 7 months of Lucas’s life, we have the luxury of both being able to not work a full-time paid job, at least for a period of time.  Given Lucas’s disability and the potential costs associated with it, the situation has pushed me to embrace aspects of that privilege, as we talked about on this blog back in 2009.   Of course, there are many working class families who also have children with disabilities, and I can only begin to imagine the additional challenges, concerns, stresses, and barriers that they face.   The fact that I have the time to write long reflections like this is perhaps one small example of how class plays out in parenting.

Speaking of writing, I recently learned that an essay I originally wrote for Lucas’s blog will be included in the upcoming Rad Dad Anthology (co-edited by Jeremy Adam Smith and Tomas Moniz, who I mentioned before.)  This makes me feel very proud; it’s a big deal to share our personal stories about parenting and the challenges of caring for a child with disabilities, and I’m really glad that Krista and I have decided to be so open about it (she’s done some amazing poetry and memoir writing in the last year that hopefully will soon be shared on this blog as well.)  Writing openly about parenting and disability isn’t for everyone, but we’ve been inspired by some of those who have chosen (and had the opportunity) to do so, and hopefully our writing can have a similar impact on others too.

Look out for part 2 of “Being a dad” in which I reflect more about parenting as a political act, challenging gender norms, non-traditional families… and more!