Lucas Camilo

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 Friday morning we read a single line from a parent of another little boy with MTM – “We held Matteo until his heart stopped beating at 4:30 am.”

Everyone in the MTM community had been following along for a week after Matteo suffered a devastating seizure and cardiac arrest that left him in a coma.  It’s impossible to describe the feelings of heartbreak we felt during this time… not to mention total admiration for the family as they struggled through the final days of their son’s life.

Since Lucas was born a number of boys with myotubular myopathy have passed away but Matteo is the first who we actually got to know.  We met him at the MTM family conference in Minnesota this summer and he stood out as a bright presence – slightly older than Lucas and doing so well in school, and in the world, that he gave everyone hope.  We also marveled at how amazing and dedicated his parents were, having driven from southern California with Matteo in order to be at the conference.  Donald, Matteo’s dad, gave us a tour of their van and proudly showed off various ingenious adaptations (as Burke took notes).  His mom Nancy joined a small group of parents that we helped organize for a two-hour session of personal sharing about the challenges of raising kids with MTM, and she was extremely thoughtful and caring in her words.  We talked about setting a meeting place somewhere in Northern California where we could get together and have a mini-west coast MTM conference some time in the future.

Matteo’s seizure was sudden and his death totally devastating for everyone.  And yet this is the reality of loving a child with a severe neuromuscular disease like MTM.  What was perhaps most powerful and heartbreaking about Donald and Nancy’s updates during the last week of Matteo’s life is that we could imagine ourselves there, in that hospital room, in that situation.  They described doing things we have done — washing the gluey gunk off after an EEG test, singing your son’s favorite song to him while he sleeps, and hoping and praying with all your soul that things will get better.  Donald and Nancy have been incredibly open, inviting the MTM community in to witness their painful journey these past days.  Other families who have lost children have in turn responded with sympathy, telling about their first days home after losing their children.  The rest of us know we could be in their shoes, and we send so much love, because that’s all that we can really do.   But we also hope that when we need it, we find a way to embody the courage, poise, love, and humanity that Donald and Nancy have shown in the last week.  Just one example of their big-heartedness in the midst of tragedy is that they worked out complicated logistics so that at least four other children benefited from Matteo’s donated organs.

Death puts everything quickly into new perspective, like a rapid zooming-back of the camera so that you can see what was always there, barely out of view: that we are mortal, and that our lives are fleeting.  We’re trying not to give Lucas too many more squeezes (he’d be annoyed that we were interrupting his precious reading and spelling time), but we are feeling extra aware of how precious our time with him really is.

(Krista writing)

I’m a bit obsessed with reading about disability these days (please keep recommendations coming!)  I just took a break half way through Far From the Tree, the giant brick of a book based on the author’s 2000+ interviews with parents of children who are “different.”  The parents’ stories of allowing themselves to be transformed by their wildly unexpected parenting journeys helps me feel like I have a tribe out there.

But it’s the political disability community – the older-guard disability rights activists, and the younger, more idealistic disability justice crowd – that talks about the experience of disability in a way that regularly blows me away.  Their poetry, theory, music, and performance resonate with my experience of parenting Lucas, but they use new frameworks and new language.   For example, they talk about this false notion in our society that disabled people are “dependent” while able-bodied/non-disabled people are “independent.”  Who said that needing help with tasks like growing your food or making your shoes counts as “independent” while needing help putting the food into your body or getting the shoes onto your feet makes you “dependent?”  Why the line?  Wouldn’t it make more sense to recognize all of our interdepence?  It makes sense to me not just for political reasons, but also because it is a view of the universe that nurtures my soul.

I write all this as a preface to my day yesterday, when things went to hell for me.  Lucas was sick.  Burke was out of town.  I won’t bore you with trying to describe how it took me all of three hours to get Lucas and myself out of bed, fed and dressed for the day, but it has to do with the fact that Lucas somehow lost all ability to entertain himself, even for 15 seconds.  He chanted “Mommy, mommy, mommy” endlessly while I prepared his food.  And while I walked from the kitchen over to his side to see what he needed.  And while I went to the bathroom.  I’d tune the chanting out, except that when he’s sick sometimes he actually needs me to clear his airway ASAP, but he doesn’t necessarily change his tone of voice from the “Mommy, mommy, mommy” chant that means he wants me to sit next to him and ask him “what kind of dinosaur is that?” about every last dinosaur in his dinosaur sticker book.

Another hard element of the morning was that yesterday was the anniversary of my dad’s death.  It’s been long enough that I don’t feel the sharp sadness every year, but since we moved to Seattle his being gone has felt a little bit more raw.  We’re so close to where I grew up – he could have been here helping us love and care for Lucas.  And to top it off, I was starting to worry about Lucas.  He’s had a lingering cold for over a week now, and while it hasn’t been too serious, it has tired him out to the point that he’s been sleeping lots and hasn’t left the house in days.  It’s likely that he’ll get over it with a round of antibiotics, but inevitably we worry when a cold knocks him out.  For kids like Lucas, a common cold can turn into pneumonia or some other illness else that could be life threatening.

All that mess of emotion – grieving, fear, worry, grumpiness about being alone for the day (one whole day!) – got the better of me, and I found myself sobbing as I sat next to my lovely, endlessly demanding son who was now prompting me to ask him another set of predictable questions.  “How do you spell cat?” he’d say.  And if I didn’t ask, he’d repeat with just a little more volume, “How do you spell cat?”  We’ve been through this enough that he knows that I know that he is feeding me my line.  Maybe he was trying to get me to toughen up, or change the subject.  But the truth is that Lucas isn’t too worried about other people’s emotions – as far as I can tell – so I think he was just moving forward with the day and letting me know that I needed to come with him.

Usually I am grateful for everything about his quirky, curious, determined personality, and it helps me through slumps.  But yesterday the slump was too deep, and the many, many hours of the day – with him and the laundry to be done (his bed smelled strongly of pee) and the dishes to be washed and the medicine to be given and the games to be fetched and the books to be read – looked like too much for me to handle.

And so I remembered that I don’t have to do this alone.  I remembered that, even though I grew up with a father who believed his main job as a parent was to teach me to be independent, I can be interdependent.  And even though Burke is on the road for work, and family is out of town, and our lovely friends in Seattle don’t know Lucas like the people who saw him grow up from his tiny, original four pounds in Washington DC… I could still ask for help.

I wrote an email to two sets of friends, grossly understating the urgency by saying I was feeling a bit overwhelmed.  Asking for help is hard for me, and the universe rewarded me for going outside my comfort zone.  Within an hour they’d both called me.  One promised to be over before Lucas’s nap to read books, the other would come over in the afternoon with her new puppy.

I’m not sure how to talk about this without clichés.  I felt like I’d won the interdependence lottery!   It was better than a locally-brewed ginger beer float with vegan horchata ice cream on a hot day. (Which, Dan, Andy, and Stef, I will take you out for any day.)  Even before they came over, what had looked like a thousand uphill miles ahead of me transformed into a do-able day.  I could sit and play the spelling game for an hour, knowing I’d be relieved soon enough.

Burke and I both want to do more of this – we want to be available to do these kinds of things for friends and neighbors, and we want to keep getting more comfortable asking for help when we need it.  A while back we thought about creating a formal care team for our family – and I’ve read about some cool ones – but we’re often not exactly sure what we need, since so much of our medical needs are covered.  This weekend having book-readers was an urgent need, and I’m sure other needs will come up.  So if you’re interested on being part of an on-call book reading Lucas team, let us know!  Or if you have ideas, models, or needs for your support team, we’re happy to offer our skills, time, and love.

It’s been nearly two weeks since our last post and there’s too much to recount.  One exciting thing is that Lucas got to meet two other kids with similar disabilities: a 4-year old with MTM whose family we’ve been hoping to connect with since moving to Seattle, and a 2-year with spinal muscular atrophy (SMA) whose family we met through an occupational therapist.  It must be fascinating for these kids to meet each other and see someone else with similar special needs.  In the first case, both Lucas and Trent have a trach and vent (which is not something you see every day), and in the other case he and Mari were facing each other in identical special needs chairs.  Lucas kept his cool, however, showing interest but also a bit of trepidation when we started getting them to play and interact.  We look forward to continuing to meet up with both families as well as others in the Seattle disability/special needs community.

We’ve also both been traveling: I was in New York 2 weeks ago and then to Chicago this last week, and Krista is in Portland now.  The three of us made the trip to Whidbey Island to spend time with my parents and check in on the Greenbank Farm Loganberry Festival (see photo), while also making various trips to the farmer’s market, Seward Park, Montlake play field for a picnic (on the wrong day, but we had fun anyway) as well as some local outdoor festivals.  We’re getting used to traveling in the new wheelchair van and its working out great.

Lucas loves the new van but he’s pretty ambivalent about going places.  In fact, he’ s been pretty moody overall lately, demonstrating regularly that his favorite word is “no”.  When he’s in one of those moods and we suggest doing something other than reading his current favorite book or listening to his current favorite song he almost  inevitably declines the invitation with a scornful “no!”  What’s humorous, and also frustrating, is that he often goes along with the proposal, eventually — either because we give him no choice or do enough coaxing to convince him — and then 9 out of 10 times he ends up having a blast.   Or perhaps that’s an exaggeration… at least 7 out of 10 times he ends up either having a blast or finding whatever we do tolerable enough to forget all about the initial, scornful chanting of “no!”

But we’re left perplexed at why he’s so insistent, initially, on not taking a bath (for example) when in fact one of his favorite things to do is splash around in his personal mini-tub with the family of sea creatures.  We have to go through the whole list of creatures before he finally agrees:

“But Octy the octopus will get in the tub with you…”

“NOoo!”…

“and Killy the Killer Whale”… ”

No!”

“and Wally the walrus…”

“No”

“and Nemo the Clownfish…”

Silence.

“And Humby the Humbolt penguin…”

“Yeah!”

I can’t help but wonder what goes on in the mind of a two-year old like Lucas that makes him rarely want to go outside or try anything new .  Is he just going through a personality stage of being a little stubborn, the usual “terrible twos?”  Or does it actually have to do with his muscle disease and discomfort that he feels, at least initially, when moving to a new situation?  Or perhaps — since resistance is almost assured every time we get ready to leave the house — it has to do with social anxiety, a creeping feeling that he’s different than other kids and a reluctance, therefore, to avoid facing tough situations.  The latter seems unlikely given the fact that he’s usually pretty agreeable when he meets new people, and as we’ve shown in videos and described over and over, he can be just about the happiest, goofiest, cleverest kid you could imagine… when he wants to be.

At this point, Lucas is most happy when laying on the couch reading books.  Which is all well and good, except that anyone would get tired reading the same book (or same 4 or 5 books) over and over with a kid.  Just ask Lucas’s grandparents, or his nurses (3 of them who spend only about 6-7 hours of waking time a week with him but nevertheless lose patience)… or his parents.

Every parent knows that there are tough things about taking care of a kid and we certainly don’t want to complain.  One need only peruse the majority of posts on this blog about the joys of being Lucas’s parents to know its good much more often than not.  Still, because Lucas can’t walk or move around by himself, and because his communication is still limited (even as it continues to improve), it’s tough some days to be his sole caregiver.  I  have days taking care of Lucas when I can’t help but wish that we had a TV and that he liked watching TV (neither of which is the case) so that we could just let him be on his own for an hour without us.  Alas, he’ll watch a youtube video for 5 minutes when we need a break but inevitably he gets bored and calls us back over, demanding more attention, more books.  The fact that he prefers books to TV is great, and yet…

I write all this during Lucas’s midday nap on Sunday.  Then, when he wakes up — as if to prove me wrong — he’s in a good mood and doesn’t bat an eye when I say we’re going to the lake.  We spend two hours walking the paths of Seward Park, lying down my the water looking at waves, ducks, doggies, trees… I get a few exclamation of “no!” but all-in-all it’s a great afternoon.  Once again I feel lucky to be Lucas’s dad… as he drifts off to sleep reading “Baby Dolphin’s First Day” for the 50th time this weekend.

Postscript – Here’s something else I was working on late last week and during Lucas’s naps this weekend: a website for Eagle Scouts returning their badges in protest of the Boy Scouts of America’s decision to continue it’s policy of excluding gay people.  Lucas gets a mention in my own letter so it seems relevant to this blog:
http://eaglebadges.tumblr.com/post/28355556567/july-25-2012-to-bob-mazzuca-chief-scout

Burke was in New York for a couple days for a friend’s wedding, so it was just Lucas and I (and nurses) here in Seattle for the weekend.

I’m tempted to give a full report of all our recent comings and goings – zoo, friends, parks, beaches, and walks along the lake.  But more significantly than what we’re doing is how happy I’ve been feeling these days.  Some of it is the sun and the outings and the adventure of exploring a new place.  But a lot of it is related to how well Lucas is doing, and what fun it is to be his mom.   Every day I get to explore something new with Lucas, and every day he blows my mind with something he’s figured out, wrapped his own brain around, or latched onto with gusto.  He makes me laugh many times a day – almost as often as Burke makes me laugh.  And he is so passionate about things.  Currently it’s Spanish, so as we walked along in the park yesterday I could hear him chanting to himself, “Red, rojo, yellow, amarillo, blue, azul.”  It gives him so much pleasure to learn, and he’s good at recruiting any willing bystanders to join him on his quest for knowledge.

And I love watching Burke and Lucas together.  Lucas still likes Daddy a little more than me, which I’m OK with.  It’s so fun to watch Lucas’s face lights up and he exclaims with such deep joy, “DADDY!” when Burke walks in the room.  And I love watching Burke hold Lucas gently as they dance to one more round of “Be My Penguin” (his current favorite song).  And then I love watching Lucas convince Burke to dance to the song one more time, even though Burke’s told him it’s the last time already.  Multiple times.

I write all this wishing I could bend time in such a way that I could reach out and hand this letter to myself back in the fall of 2009.  So many of you reading this were there with us, visiting and calling and feeling the intense fear and grief and love that came with Lucas’s entry into the world — I wish all of us could have known what we know now.   Because all of this was unfathomable at the time, at least to me.  A diagnosis of a lifelong disease seemed like a sentence — all the things our baby would never be able to do.  I could never have imagined that there would be days that I’d be grateful for MTM.  I hesitate to write those words, because I know it’s so hard to believe.  But this disease so profoundly affects how Lucas is in the world, and we love Lucas so much, that it feels like splitting impossibly fine hairs to separate loving Lucas from the disease.  Last night when Lucas slowly and carefully, using a precise hand-over-hand maneuver, turned his book around so I could see the words on the page he was “reading” without losing his place, I was overwhelmed with pride at his amazing talent, agility, smarts and determination.  I know all parents are proud of their kids, but I’m not sure I would ever have experienced this particular kind of swelling in my heart if it weren’t for disability.

On days like this (and it’s not every day, of course), I want to reach out to every family with a new MTM diagnosis and assure them that their life, too, will be absolutely joyous at times.  But I know that’s only partially helpful, since the hard, sad, frustrating and painful moments are real too.  And maybe more importantly than reassuring anyone else, I want to record this feeling because things in our life will change — we’ll face transitions, new doctors, inaccessible spaces, intense staring on the street… or nothing new at all.  My mood has been known to swing wildly of it’s own accord, so maybe next week I’ll be back here reading this to remember how fleeting any emotion, even the deepest ones, can be.

I may be extra reflective about how wonderful our life is right now because Lucas appeared to be sick last Monday.  He was listless in the morning, and by afternoon he was fully passed out.  We couldn’t get him to wake up from his long afternoon nap that basically kept going into the night.  He had a slight fever and looked so bedraggled.  So when he woke up looking better the next morning, we breathed a huge sigh of relief.  And we took him to the pediatrician to confirm that all was well.  We are so lucky to have Lucas almost constantly in good health, so the flicker of a reminder that his well-being is still delicate helped put all the good days in even greater relief.

In the last post we mentioned how great it is that Lucas is doing well because it leaves us energy for “other aspects of the transition.”  Well, here’s the blog post about some of those other things.

I’m tempted to just post here our forty plus pages of google doc notes that Burke and I created to track and communicate with each other everything related to the move.  Or share a link to the online database we created just to keep track of the professionals we need to talk to in Seattle about Lucas’s life.  There are the nurses, social workers, home care administrators, therapists, evaluators (Lucas is constantly being evaluated), respiratory therapists, new doctors, advocates, equipment repair people and more.  I’m not really complaining – when you need help, it’s good to have a long list of people who might be helpful.  But the reality is that I wish we didn’t have to deal with all these people.  There are days when it feels like we need nurses in our home to take care of Lucas just so we have the time to talk to other people about coordinating his care.

Probably the single most difficult meeting we’ve had was an appointment with a new pulmonologist when we had been here just three days.  She was young and overly ambitious, and she immediately wanted to make major changes to Lucas’s vent settings.  She went so far as to suggest we admit him to the hospital for a few days so she could “play with his settings and observe him.”  The act of holding ourselves to our seats and acting polite as we declined her totally ludicrous proposal took about all the energy we could muster.   Or really, more than I could muster.  I came home and got in bed and cried.  It felt like there’s just so much in flux right now – the idea that she’d be willing to risk Lucas’s short term health in order to better understand his vent settings felt like too much.  We both suddenly missed our doctors in DC who believed that if Lucas was doing as well as he possibly could be doing, why change anything?  And who trusted us.  And who noticed that we do most of his care-giving and deserve a little bit of credit for how well he’s doing.  Deserve at least a pat on the back for how well we’re all doing.

And for the past few weeks there really have been just so many new people to meet and equipment to learn.  We got a new pulse/oxygen monitor that burned Lucas’s toe and alarmed unnecessarily in the night.  There are all the people that come to evaluate Lucas – measuring and ranking and quantifying Lucas’s abilities and disabilities, a totally messed up process that is a necessary loophole to get things that are sometimes only marginally helpful.  For example, Lucas is going through many evaluation to get us Early Intervention services, which will provide therapies for him that our insurance would pay for anyway.  So mostly what we get out of the many hours of evaluations and phone calls and paperwork is another well-meaning social worker in our life.

The biggest time suck for us over the past few weeks has been the struggle to get insurance to pay for Lucas’s nursing.  It’s hard to know how much to get into here, because the saga is extremely long and complicated.  We’re fighting with our insurance, which is part of an industry that has billions of dollars which it mobilizes to justifying denying necessary services.  I used to naively think that “medically necessary” meant insurance had to pay for it.  Nope.  I’m sure many people reading this will laugh – anyone who’s had serious health issues knows that need has little (nothing?) to do with insurance actually covering something.

We’ve been fortunate to meet some incredible people in this fight – doctors and social workers and now a killer lawyer who are all going above and beyond for us in this fight.  The political moment – with the Supreme Court hearing arguments that it is un-American to try to fix this broken system – combined with the fact that we have to waste our time fighting this rather than hanging out with Lucas, feels like insult on top of injury.  Possibly the most painful part of this is knowing that we have so many resources, and that most families living with severe disabilities have to do this with far less money, time, and space than we have.

So of course we try to find ways to make our fight useful to more people than just Lucas.  We found out that in Seattle, the main home health supply company that provides ventilators to kids does not provide the small, travel lithium-ion battery that we have.  Here they give families what we call the “boat battery” – a gigantic battery that probably weighs 10-20 times more than the small one.   When they tried to hand us the boat battery, I yelled at the (quite shocked) nice home equipment ladies.  They told us they can’t get the lithium batteries, but that simply can’t be true, since most of the MTM kids we know have them.  Burke was out (we’re good at taking turns being the “reasonable” one when the other is too upset to talk), so I just snapped.  “Do you have any idea how much more mobile we became when we got the lithium battery?!  This is a mobility issue for all families!”  They said they’d see if they could find a way to get us a battery – maybe they’d look for a donated one for us.  I said no.  Not just for us.  Everyone with a vent needs this battery.  They need to figure out how to make it happen for everyone.

On top of the stress of all the meetings and appointments and evaluations is the fact that we’ve uprooted ourselves from our friends and community in DC.  I miss having an amazing number of friends who I knew I could call when we were tired who would come play with Lucas, starting with Sha just up the street.  Its not that we even called for the help all that often, but just knowing it was available turns out to have been a major source of comfort.  Last weekend, with Burke gone and the rain pouring down and all this mess of services to navigate, I longed to be back in DC close to our friends there.  And we weren’t even alone for 24 hours – Ashley brought Lucas’s cousins over in the evening and we got some company and a change of pace for a bit.

And of course there are still all the great things about being here.  New friends are already welcoming us in wonderful ways – dinner with Chris’s family, then dinner with CISPES friends, and then two other sets of friends have called to tell us they’re on their way over with food.  It’s also nice to have Burke’s parents close and stopping by to read Lucas his favorite books and join us for excursions to the zoo or aquarium.  So we’re doing great – still endlessly grateful for all our family and friends’ love and support.  But since there are the darker days when it’s just the three of us and our long lists of calls to make, emails to return, meetings to set up, and people we don’t want to need necessarily in our lives… we wanted to find a way to try to write about those moments, too.

It’s been an up and down holiday season for the Stans-Hanson family.  We’ve had some highlights, like the Christmas day walk in the park and the visit by Krista’s family (Burke’s parents arrives tomorrow).  But we’ve also had some big challenges and hard moments.

Burke was gone in mid-December visiting family in Seattle and then doing video at an immigrant rights conference in Montgomery.  In addition to a good time with family he had a few different job interviews while he was in Seattle.  One possibility with a great organization got us particularly excited, even thinking that our move to the Northwest could be imminent if it worked out; alas, it was not to be as they offered the job to someone else.  There are a couple faint possibilities still out there but this setback has us thinking that we’ll have to push back our timeline once again.  Burke is finding that it’s not easy to get the kind of job he wants in Seattle so we’re also getting creative about other possibilities.

We’ve had some beautiful and unseasonably warm days in DC recently, but in general we have felt the weight of winter days that have grown cold and short, with darkness descending all too early.  Indeed, sometimes living in a relatively small basement apartment can start to feel isolating, especially in the depths of winter, and especially given the challenge of Lucas’s health issues.  Over the past year venturing out of the house has gotten easier for us – we’ve become more adept at packing up Lucas and all his accessories, and Lucas is stronger – but on 35 degree days there’s not a lot of allure to go out walking.  With a typically developing kid it would be easy for one of us to jump in the car and zip to a museum, or a cafe, or the library… anywhere, really, to get a change of scenery.  But of course with Lucas such trip involves a lot of planning and preparation, especially because he still needs both of us (or one of us and a nurse) for any major journey out of the house.   Packing up Lucas and his wheelchair, ventilator, suction machine, and emergency bag for a trip, then checking that all the supplies are stocked in the various bags has all become second-nature for us.   But it’s still complicated and time-consuming and all that stuff limits your options of where to go and how long to stay.  So if one of us is working then the other one most likely is staying put in the house with Lucas, hanging out in the same 24 square feet of our living room each day, working hard to make it a fun and engaging place for Lucas.

So despite a few good walks and a party at our friends’ Max and Jess’s place on Sunday, the holidays have done a lot to remind us of our limits.  Flying to the other coast to spend Christmas with our extended families simply isn’t an option, nor is a vacation in a warm place (unless we decide to take a long train ride to Florida).  And now that Lucas’s favorite nurse Florence has taken a new job at a hospital, our options for occasional escapes closer to home are even further limited.  (We’re actually still in denial about Florence leaving so we’re not going to say anything more about that for now.)  Ultimately the winter darkness, combined with the cramped spaces of our apartment, can make the rest of the world feel painfully out of reach.

We don’t mean to complain, and in fact we feel immensely lucky every day to have Lucas with us, and awed by all that he does.  We tend to be pretty positive people (as you can tell by the tone of most of our blog posts) and so we’re also doing a lot of things to make the holidays fun for us and Lucas.  Like making our own refrigerator magnets.  And singing the “birdie song” with Lucas ten times a day while dancing around the living room.  And sitting down to talk about all the amazing organizations that we donated money to over the last week.

Lucas was also made famous on the radio recently… or at least on a podcast :)  Burke helps with a website called The Fight Back and a few weeks ago his friend Pete interviewed Lucas’s favorite radical children’s songwriter, David Rovics. Check out the full post here, and listen to the section preceded by a Lucas-inspired question below: