Lucas Camilo

(Krista writing) There’s no easy way to say this, but death has been very present in our lives this summer.   A friend’s mother died earlier this month after a long fight with cancer.  I’ve known Linda since I was 10, and she was an amazing woman, the kind of person who you looked forward to seeing – always welcoming and warm and easy to talk to.  When she was diagnosed with cancer years ago I understood just how unfair disease is.  It’s still hard for me to grasp that she’s not at home with the rest of her family in Florida.

And then on August 17, Saul Solorzano died.  Saul was one of the most public leaders of the Salvadoran community in Washington DC, advocating for immigrant rights and leading the largest Central American service agency in the city for over 15 years.  We had met him through our work with CISPES, and many of our friends in DC were close to Saul and his family.  Saul died in an accident – he was 49 and his youngest daughter just turned four this summer.  The Washington Post published a good obituary here.

Burke was able to go to the wake and funeral procession for Saul this weekend.   People came out with their grief and sorrow and banners and signs.  The procession was both religious and political, as people spoke prayers and sang songs from the revolutionary movement in El Salvador.

Needless to say, death strikes a sharper chord with us now.  Lucas came into our lives waving a big, unwelcome flag announcing mortality.  He almost didn’t make it in the first few days of his life.  When we brought him home from the hospital he was still so fragile that we had to be on constant alert, and more than once we resuscitated him from a scary grey-blue color back to a vibrant pink.  And then when we got his MTM diagnosis, and we learned that his life expectancy was short.  Though we try to put that aside and just live each day like any other day, inevitably the knowledge that there are no guarantees for our future has helped anchor us in the present.

Last year, when the diagnosis was still new and I was grappling more with fear of death, I read a great book called Love and Death.  It was written by a Unitarian pastor, Forrest Church, as he was dying of cancer.  In his last year of life he wrote out his thoughts about what death teaches about how to live.  And he managed to articulate over and over what so often feels cliché – that we’ll all die some day, some of us old and some of us young, and so we should use that knowledge to remember to live each day that we have fully.  And by fully, he meant embodying some of the universal religious ideas of forgiveness, love, and humility.  For him, the fact that he saw his own life as finite – that he had a very real deadline for finishing his book, as he put it – gave him all the more awe for the love and beauty he found in his family and community.

Somehow, I think if Lucas could write a book it would say something similar.  It might use simpler suggestions: Behold the duck!  Behold the dog puppet!  Behold the triangle block balanced so delicately on top of the star block!  Look some more!  Duck!  Dog!  Blocks!  All with awe and enthusiasm that has nothing to do with what tomorrow holds.  Burke and I have been following Lucas’s lead, trying to remember to feel awe wherever he points us.

Often we’re grateful for all this deep insight and profound presence, and there are days I think I wouldn’t even trade away MTM if I could because of everything Lucas – exactly as he is – is teaching us.  But there are days that I’d throw away all this insight in a heartbeat.  Mortality as a theoretical proposition is a useful devise.  Mortality meaning death and an end, or at least a major transition, is much harder.  At the Family Conference in Minneapolis last month I sat through the slide show of kids with MTM/CNM who have passed, and I walked away with a deeply aching heart, wishing not to know.  So many kids have died, so many, so young.

And then a few days ago one of Burke’s colleagues, an activist and mother to a three year old, lost her partner to cancer.  Eric and Lorena had spent many years fighting the cancer, and this summer they’d been trying everything possible to beat back the disease, keeping friends and community updated as they did.  They fought for survival within their own family while also maintaining their dedication to the larger struggles for community and social justice.  And despite everything – despite his young age, his commitment, their desire for him to get better and all the love that surrounded them – he passed.  You can read more about the life of Eric Quezada here.

In one of of the last public messages before Eric passed away Lorena wrote, “Eric’s spirit is strong, his body is not anymore—soon he will move on and continue to be alive in each of us and everything he did and the people he touched. Death is part of life.”  We never met Eric but many of our friends and fellow activists in the Bay Area worked alongside him and they are mourning his passing now.  What brought tears to us upon hearing the news Wednesday morning was the strength and courage of those close to Eric, the hope and defiance captured by the phrase “la lucha sigue” (the struggle continues).  Death is indeed part of life, but perhaps just as importantly, life — in all its inspiration and struggle — continues on after death in the spirit of those who are impacted.

(Krista writing) Tomorrow I’m flying to Idaho, then driving to Jackpot, Nevada, to mark the 10 year anniversary of my dad’s death.  It’s strange for me to have so many people in my life who never got to know my dad – he’s such a big part of who I am today.  So I thought I’d write a little about him here.

Gary Craig Hanson was brilliant, warm, and incredibly hard working.  He taught me how to build a house (when I was five) and how to ride a horse (when I was ten) and how to save money and run a business (when I was still way too young to question capitalism).  Somewhere I still have a list he helped me to make with my short, medium, and long-term goals scrawled in pencil on a torn-out piece of notebook paper.  My dad was also deeply emotional, at times passionate and happy, at others angry or overwhelmed with despair.

My dad died on July 7, 2001 when he was flying his small plane to a “fly-in” with other pilots in Jackpot.  He’d had his license for about five years and had flown that plane dozens of times.  Weeks later, when we were going through his file cabinets, I found a folder with old pictures of airplanes.  There was a cover letter from TWA to Gary Hanson, saying they had enclosed the pictures of planes he had requested.  It was dated 1950 – he’d been dreaming about flying since he was five years old.

On the day of the fly-in, when he banked the plane to turn to land, the conditions were just wrong enough that the wing tipped and the plane spun out of control.  At the time I was living in Cholula, Mexico and had no phone or computer, so it took 24 hours for word to reach me.  My uncles drove to Nevada and brought his ashes home to Oregon.

It’s been a strange thing to become a parent without having my dad here to witness and support and love Lucas and me.  I know he would have absolutely loved Lucas, and I know it would have made him happy to see me grow into being a mom.  He used to tell me how much he loved learning from my sister and me, and we were still practically kids (20 and 24) when he died.   So I know if he were still here he would have been enthusiastic about learning everything Lucas has to teach.

I’m not exactly sure what I’ll get out of this trip, but I’m thankful to Burke for encouraging me to go.  I’m also glad my uncle, aunt, cousins, and family friends will be there with me.  I’m looking forward to knowing what the place looks like – to seeing the scenery he saw last.  I’m looking forward to telling stories and remembering him.  And I’m hoping to find a place in the desert to sit and begin to tell him everything I’ve learned in the last ten years.

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Prayer for My Father

May your beautiful, graceful spirit know how deeply you are loved.

May we carry on your legacy of courage and curiosity,
service and awe at the workings of the universe.

May we continue your work of learning
self-acceptance and forgiveness.

May we wake each morning with gratitude
for the tree or mountaintop or field or flower
we can see from our kitchen window.

May we find connection through humility,
admitting our weaknesses and
wearing our greasy work clothes in public,
even when it embarrasses our children.

May we have the courage to dream radical dreams,
to believe that we will one day fly,
and be fearlessly content regardless of the outcome.

May we know the tenderness of a listening parent
and the truth in stillness.

May we forgive ourselves, our families, our friends,
then strangers and enemies,
knowing they, too, dream secret dreams.

May we treat animals with kindness and respect
and a love that recognizes equality of all beings living on this planet.

And may our hearts find freedom
so we can fully behold the magnificence of this life.

Gary Craig Hanson, Sept. 10, 1945 - July 7, 2001

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!

Spring seems to be slowly arriving in Washington DC, with beautiful, sunny days still interspersed with cold temps and the occasional wind-storm or freezing rain.  We’re excited about getting out outside for some walks with Lucas, hopefully as soon as this weekend when Burke’s parents are in town for a visit. The transition that spring represents also has us thinking about larger transitions down the line: the likelihood of leaving DC in the not-so-distant future and moving back to the Pacific Northwest.

For a couple years now we’ve talked about the possibility of moving to either Seattle or Portland, despite our friends’ great lobbying efforts to keep us here.  Both of us grew up in the Northwest, our families live there now, and the mountains, rivers, and Pacific Ocean are in our blood.  In the long run we imagine ourselves living in the great states of Washington and Oregon, and as we think about finding a more stable living arrangement – since the mid-90s, neither of us has lived in the same house or apartment for more than 2 ½ years– it’s logical to make the move sooner rather than later.

And yet there is a lot that we love about Washington DC that’s going to be hard to leave.  We’ve managed to build a wonderful community of friends and fellow rabble-rousers, and leaving DC would mean leaving that community behind, not to mention some of our favorite organizations in the world.  We moved to DC in the fall of 2007 and yet it feels like we’ve been here a lot longer.  In a city with a reputation as a transient hub (at least amongst it’s more affluent, white residents), we’ve manage to encounter a much deeper sense of community than we ever imagined when we first arrived.  It’s because of such great friends and community that it’s hard to even talk about the possibility of moving.

The other challenge, of course, will be moving with Lucas.  We’ve developed quite a network of doctors, specialists, therapists, and nurses who are part of Lucas’s team, and re-establishing that network somewhere else will take time.  For now at least, Lucas needs to be in a good-sized city that has adequate resources and support for people with disabilities.  We’re confident that both Seattle and Portland will do the trick, but it’s nevertheless daunting to imagine the process of building a whole new medical and therapy team.

So as we start to think about moving, there’s a lot that we need to investigate and have in place.  Having sufficient health care insurance in place is essential, and part of the reason we can’t just move next month is that we need to ensure we’re on a family plan that can move with us (at least temporarily) as we transition of from DC to the west coast.  Then there’s secondary insurance and the eligibility requirements and waivers necessary to get Lucas on a Medicaid-funded program locally that will cover things like nursing and equipment that may not be covered under our primary insurance.  We’ve started to reach out to parents of special needs kids in the Northwest to investigate these things, and are planning trips to Seattle and Portland in the coming months to set up meetings and continue these discussions.

And then there’s schools.  Lucas is only 18 months old but we’re already starting to imagine what it’s going to be like for him to go to school.  What are the public schools like in each place in terms of their accessibility to and integration of children with disabilities (especially medically fragile kids like Lucas)?  Are there other schools specifically for children with special needs that are worth considering?  What kind of parent and support networks exist?  (And will there be books about disappearing ladybugs, Lucas asks?)  These are all questions we’ll be looking to answer in the coming months.

We know some of our blog readers live in the Northwest, while others live in different parts of the country but have a lot of experience thinking about these challenges.  We’d appreciate any thoughts, input, contacts, and connections you may have that will help us along our way.  We’re excited but also a little intimidated about this process, and would appreciate all the help we can get.

For the past couple weeks we’ve been wanting to share the most recent news from the MTM community, but we warn that it’s sad news.

Joshua Frase, a 15 year old with Myotubular Myopathy, passed away on December 24.  Joshua was one of the best known kids with MTM because his parents were very involved in raising money and awareness about the disease.  They started the Joshua Frase Foundation in 1996 and have raised millions of dollars for research that they hoped would lead to a cure for MTM within Joshua’s lifetime.

You can read some articles about Joshua and the Frase family here and here.  We haven’t ever met them, but Joshua sounds like an amazing kid.  He was a great student and was extremely motivated.  He got straight A’s despite not being able to sit up in school for the past few years.

We’ve been sad for the Frase family, thinking about them often through the holidays.  But maybe more significantly to us, Joshua’s passing is also a hard reminder about our lives.  Another remarkable thing about Joshua is that he lived as long as he did.  At this point, fifteen years is a long time for a person with MTM.

We don’t often talk about this fact – Lucas’s short life expectancy – because ultimately we want to hold out hope, and because we don’t have any concrete statistics about kids living with MTM.  One of the articles, for example, says that according to medical literature, 90 % of kids with MTM die before their first birthday, but then it goes on to refute that claim.  The truth is that we haven’t heard about any people with x-linked Myotubular Myopathy  – the most severe form of the disease that affected Joshua and now Lucas – living into adulthood, though this is most likely because only in the past decade or so has the technology been available to help kids with MTM survive through their early years.  We have been in contact with other MTM families who have boys aged 9 or 10 who appear to be thriving within the limitations imposed by the disease.  We want to hold onto the possibility that within Lucas’s lifetime there might be major medical advances, and that Lucas is unique and strong and will defy the odds.

At the same time, knowing that the life expectancy for kids with this disease is short reminds us that the time we have with Lucas could be much shorter than most parents count on having with their children.  There are no words to describe how painful that is.  To love a baby so deeply – to keep falling in love with him more and more and more – and at the same time know that the odds say that he won’t live more than 10 or 15 years.  It’s horrible.

There are moments that it feels OK to be so acutely aware of mortality.  Ultimately none of us have a guarantee that we’ll wake up tomorrow, or live 10 or 15 more years.  So we let Joshua’s death remind us to treasure and take advantage of the time we have together, however long it may be.  And we really mean this, not just as a cliché, but in practice.  On the days that we start to feel lost  – worrying about what it means to be a stay-at-home mom, or when we’ll ever move to the Northwest, or how we’ll get health insurance, or if we’re doing our best to build social justice movements – it’s powerful to remember to stay present with each other and the people around us rather than getting totally sucked into concerns about the future.  Of course we can’t help but worry about what’s to come, too.  But ultimately Lucas helps us keep things in perspective.  Having dinner together tonight is important.  Lucas getting immense pleasure from chewing on frozen peaches and singing the nanana song is important.  Learning the word “nose” is an accomplishment deserving major celebration.

Most of the time this awareness of mortality is deep in the background of our lives, and we just treat Lucas like Lucas, the fabulous kid that he is.  With the passing of Joshua Frase it’s on our minds, so for now we felt the need to share these thoughts while also acknowledging the extraordinary life of Joshua and many other kids with MTM that have come before Lucas.

The other day Krista saw a little boy running around the coffee shop and it occurred to her that he was about the same height as Lucas.  She asked his mom how old he was and the answer was 2.

There are two things that were immediately striking about this: first, that a kid Lucas’s size is running around (quite a contrast to Lucas who has never stood, or even sat up on his own for that matter); and second, that Lucas is a tall dude for his age!  Lucas now weighs over 25 pounds and is 33 1/2 inches tall.  That’s almost 3 feet tall, and he’s only 16 months old!

The question “what’s Lucas up to these days?” is always a tough one to respond to in a brief sentence, but these days we’ve got a pretty good stock answer: “he’s, uh, growing.”  Sometimes we wake up on the morning and go to give Lucas a morning kiss in his crib and it seems as if he’s added another half inch during the night.  In fact, he’s nearly grown out of his second crib in the back room – there are only a few inches of space left before both his feet and the top of his head will be touching the respective ends.

All of this seems well and good – every parent loves to see their child grow, right? – except that as we previously mentioned, Lucas can’t sit up or move his body much as all.  While his fine moter skills are developing remarkably, his ability to twist his torso, to shift body positions or roll over, is pretty much non-existent.  His muscle tone is so low that he needs braces and props to hold him in any position other than lying flat on his back or tummy.

Under these circumstances, Lucas’s rate of growth isn’t all that exciting; rather, it’s downright scary, at least when we imagine ourselves years down the line.  The taller Lucas gets the more chance he’ll have of developing scoliosis later in life; the longer his torso gets, the quicker he grows out of his special braces and chair, meaning that he needs new ones.  Mostly though, it’s his weight gain that gets us thinking about the challenges of the future.

Already, picking Lucas up is a complicated ordeal, and at this point Victor and Florence (Lucas’s nurses) are the only people other than us who really feel confident doing it.  For example, when you put a single hand under his waist and lift, his butt goes up but the rest of his body stays on the ground.  His arms fall back behind him, his legs droop, and if you don’t have the other hand firmly behind his neck then you’re in big trouble.  All of this is compounded by the vent tubing connected to his trach and the pulse-ox monitor probe running from his toe, which add an extra layer to an already challenging maneuver.

And yet, lifting Lucas is not only necessary but often a total joy: when Lucas is in a good mood there’s nothing he enjoys more than  getting swung around the room,  or having his head flipped head back into “upsidedown Lucas” position, or laying on someone’s chest for a good snuggle session.  It wasn’t long ago that we could easily pick Lucas up and do all this stuff, and we can still pull it off, but 25 pounds of a very floppy body is different than 15 pounds.  And it’s hard to imagine 35 pounds.  Or 50.

The reality is that Lucas will may ever be able to walk, and he probably won’t be able to sit up straight on his own anytime in the near future.  Playing with him in the ways we now do will get more challenging as he grows.  Moving him from place to place is also going to get a lot harder.  Burke has recently committed to stretching his back more and starting to strengthen his abdominal muscles in order to better carry Lucas.  He jokes that he’s going to have to get a personal trainer soon in order to get all of his Lucas-lifting muscles in better shape.  And the thing is, it’s not really a joke.

There’s not much we can do about Lucas growing.  He’s not at all chubby right now and we’re certainly not going to starve him.  In general, being tall is a characteristic of people with Myotubular Myopathy, one of those freaky things about this disease that seems to doubly punish kids like Lucas: not only is this genetic mutation going to dramatically inhibit the development of your muscles, but it’s going to make your body really long as well so that moving around is that much more difficult.

We don’t mean to complain about this, nor to we want anyone to feel sorry for Lucas.  This is just a reality that we’re coming to terms with and which is important to share as we enter into subsequent stages of Lucas’s development.  There are so many amazing things that he’s doing these days that we (usually) can’t help but focus on the positive.  But every pound he gains and every ½ inch he adds to his height gets us a little close to that day when it won’t be so easy to pick Lucas up and dance around the room… and that’s scary.  Because dancing around makes Lucas happy.  And so does bouncing on daddy’s knee as he cruises in the make-believe choo-choo train.  We love Lucas so much that seeing him happy at these moments is the greatest thing in the world.  So we’ll cherish each minute, and look forward, sometimes anxiously, to new adventures that he can take part in even as he grows bigger…

Lucas has had quite an active social life lately, making frequent trips from our home despite the brisk fall temperatures.  And he’s unfazed by the many steps we have to go through to get him packed up… nor do the controversial new TSA regulations seem to bother him!  Ok, so we haven’t been through an airport yet with Lucas, but in the last few weeks we traveled upstairs for a great thanksgiving dinner with our neighbors, took multiple trips to our friend Sha’s house up the street, and made our way to a potluck dinner next door.   We’ve also had more visitors lately – close friends and family as well as people meeting Lucas for the first time.

It’s fun and exciting for us, but at times Lucas seems less enthusiastic about it.  In fact, he can become really shy when meeting new people.  It’s not an easily recognizable shyness; anxiety about strangers causes most kids to cry or run for their parents, but Lucas’s reaction is to appear totally spaced out.  People often end up saying, “Poor guy! He looks like he’s ready for a nap.”  One look at his pulse-ox monitor proves that to be false, and it’s especially frustrating because we’ve probably recently talked up Lucas’s new-found expressiveness, or his ability to vocalize over the vent, or his expanded arm movements.   (We should add that Lucas much prefers laying down to sitting up, so the fact that we often try to sit him up to meet people probably adds to his awkwardness about social situations.)  “He’s just not in the mood,” we say.  “But you should see him when he is.”

Two weeks ago we were excited to meet in person a family who we had previously connected with over the Internet.  Their daughter is about Lucas’s age and also has a tracheostomy.  There are dozens of quite unrelated reasons babies get trachs — Lucas has it because of muscle weakness, others because of lung problems, others because of brain or nervous system problems.  So it was a little bit startling for us to meet a little girl who has a plastic tube in her neck similar to Lucas’s and yet see that her family’s challenges are very different from our own.  Matt and Amy arrived with Brianna in their arms, not in a heavy stroller and unattached to a vent or monitor.  She crawled around our apartment, noticing interesting toys, grabbing them easily and shaking, studying, and tasting.  She could even pull herself up to a standing position.

The meeting and other recent interactions highlighted for us the extra uniqueness of our already unique situation.  Besides the trach and vent (Lucas’s most obvious and visible differences) he also remains very floppy.  He still can’t roll from his back to his side, or lift his legs off the ground, or hold his head up in the middle when he’s lying on his back.  He has very little head or torso control at all.    It’s scary to wonder if he’ll ever be sit up comfortably, without braces, for an extended period of time.  And sometimes this combination of his shyness around others and his extreme low muscle tone make for an awkward situation out in public.  All the more reason that we are appreciative of the amazing compassion, patience, and understanding many of those around us show for Lucas in his special situation.

Lucas has been waking up in a good mood lately, singing and laughing from the moment his eyes open.  The things that are so difficult vanish momentarily when Lucas grins with delight and waves his suction tube in the air.  We are grateful for it all — the bliss, the challenges, and the people who are loving us and walking with us on this journey.

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The writing class Krista has been taking ends this week.  We appreciate everyone who reads our writings on this blog, the thoughts sometimes still in formation when we post them.  Here’s a poem Krista wrote, another work in progress.

Cradling My Precious Son

I sit, holding you in my
lumpy lap.  You tell me,
scrunched face, head pushing back,
you are tired.

Everything
is uncomfortable

I plead, silently, for you to
find a place on my lap
that is acceptable.
I lift your heavy head, droopy arms,
sagging midriff,
and tilt your weight from
my left arm to my whole chest.

You lean in,
tell me – without sound –
you want your thumb.
I slip my hand
around your body,
under your soft elbow.
And in one fluid movement,
as if our bodies were one again,
I help you bring
your hand to your face.

As if that movement were one
we both had always planned on –
me helping you lift your hands.

Thumb in mouth,
eyelids immediately heavy,
you say thank you
as you submit to sleep.

And I feel the surge of the
deepest pleasure of motherhood,
oxcytocin and love and spirit and God
all filling my body at once.
All cradling my precious son.

We’ve mentioned a couple of times the book “My Baby Rides the Short Bus,” an anthology written by parents of kids with disabilities.  It’s been such a helpful and moving book to us that we’re organizing an event with one of the book’s editors, Jen Silverman.  So if you’re in or anywhere near Washington DC, please save the date!  December 4, 5-7 pm.

We’re excited about the opportunity the event will give us to hopefully gather lots of people who care about kids and disability and rights and justice.  Empower DC’s Child Care for All campaign is co-sponsoring the event, and a number of parents in that group have been organizing together for years to push the city for more public resources for special needs families.  Jen and possibly one other author from the book will read and share their experiences.  And who knows — we may even share something about what Lucas has taught us so far.

As if the blog weren’t material enough to choose from, there’s now even more written about Lucas.  Krista has been taking an online writing class for the past month, producing more stories and reflections about our lives as a family.  Here’s one of the short pieces Krista wrote — part of a longer sequence of snapshot stories from life in the hospital last year.

———–

October, 2009

There are three picnic benches and a small gazebo that sit mostly abandoned behind Children’s Hospital.  They are dwarfed and out of place sitting near the ambulance emergency entrance to the hospital and out of any hospital visitors’ or workers’ path into our out of the building.  Those tables became a resting and grounding place for Burke and I – a place I now remember with strange nostalgia when I think back on those three longest months of my life.

I remember sitting at the picnic table, calling friends.  I needed the grounding that would come from talking to people outside the hospital, friends who knew me and believed in me and who would love me no matter what came out of my mouth, even if nothing came out of my mouth.  Once, when Lucas was two months old, I called Alice and told her “I think I’m a better person already.”  She smiled on the other end of the phone and assured me that I was.  And that this moment of seeing something positive about my baby’s illness was not about denial, or just an illusion, but something real that I could also hold onto.

I told Alice that day about looking at the disabled children we saw in the hallways – the ones with extra tubes, with big wheels chairs, with braces and canes and walkers, with drool and drooping jaws and loud voices.  Burke and I saw these kids in the radiology waiting room we walked through every day on our way to the cafeteria and knew, without saying so, that we both wondered if Lucas would look like them one day.  And I was ashamed to realize that every time before now that I’d seen kids with obvious disabilities, especially cognitive disabilities, I distanced myself – quickly and without even stopping to notice – and assumed that it would never be me.

But now, as I walked past these kids and their awkwardness and their families, I not only knew that could be me one day, but I realized that despite all our hopes that Lucas would recover and be a “typical” kid, I would love Lucas no matter how different he looked.  And that, by extension, I loved these unknown kids and their families and wished I could protect them from people who thought like I had.  Like a religious convert who’s suddenly found Jesus, I was filled ideas of evangelism.  What if everybody could feel this?  What if we all could know that all people with all kinds of abilities and disabilities are as perfect and loveable as everyone else?

For better or for worse, those moments of lucidity and exuberance were short lived, and I had no energy for proselytizing.  By the time I got to the cafeteria I was usually distracted by the task of reheating our lunch in the dirty public microwave ovens and the other menial tasks of surviving each day.