Lucas Camilo

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.

Lots has happened in the last week and a half and we’re excited to finally get a chance to report and reflect.

First, we must acknowledge the significant victory of last week’s ruling by the Supreme Court to uphold most of the major aspects of the Affordable Care Act.  When it passed we wrote that ACA didn’t go far enough – and we still believe that to be true.  But we also understand just how much Lucas and many others like him have already benefited from the changes brought on by health care reform, and how devastating it would have been to see these things reversed.  We’re talking about the fact that the ACA makes it illegal for insurance companies to deny coverage to children with pre-existing conditions (something that will eventually be extended to others), as well as the elimination of life-time insurance caps.   The law also benefits people with disabilities by expanding coverage for mental health and home/community-based services, and by expanding access to Medicaid.  Indeed, many people are sleeping better following the Supreme Court decision, even as we must continue the fight for deeper reform.

On the same day as the health care decision was announced we signed the paperwork on the purchase of a used wheelchair van for Lucas.  Needless to say, buying a mobility vehicle is very different than getting a normal car, if only for the fact that the factory conversion basically doubles the price of an average mini-van.  In the end, the process was much easier than we would have thought, in part because we found a really solid used van — via a special needs list-serve — that has only 41,000 miles on it.  These vehicles are very specialized and this one seems to have been made for Lucas.  It has an easy fold-out ramp (rather than the more cumbersome power-lift which he’ll likely need later in life) and self-retracting straps that cinch his wheelchair in place.  It wouldn’t work for an adult but it’s perfect for Lucas and we’re grateful to the family for selling it at a reasonable price and passing it on in good condition.  We also know other families who have spent months raising money and struggling to find financing to be able to purchase a mobility vehicle.  So we’re feeling extremely lucky to have been able to put a down-payment on the van and secure a low-interest loan from our credit union.  And best of all… Lucas loves it!  He can now face forward and see out the front, and we don’t have to maneuver him awkwardly into a undersized car seat every time we go out.  Big progress!

Just when we thought the week couldn’t get any more momentous suddenly we found ourselves packing up for the first ever Burke-Krista trip without Lucas.  Since he was born Lucas had never spent more than 8 hours of daylight without at least one of his parents at his side.  But in May we secured coverage for respite care, opening the way for us to take an out-of-town trip.  Four different nurses spent time with Lucas over the course of about 48 hours.  Burke’s parents also played a huge role, hanging out with Lucas, bringing Bruno to play fetch, reading countless books, countless times.  They also sent text messages and called to give frequent updates from the home front.  Perhaps surprisingly, we weren’t all that nervous, knowing that Lucas was in good hands… and that, not as surprisingly, Lucas didn’t seem to miss us that much.  According to one nurse, “I hate to say this but he didn’t mention you all day long and seemed completely content.”  Our feelings weren’t hurt in the least; to the contrary, we were extremely grateful for competent caregivers and tireless grandparents, confident that Lucas was in good hands the entire time we were gone.

Oh, and did we mention it was an amazing trip?  Three beautiful hikes in the North Cascades, returning to our northwest roots of spectacular mountains, rivers and waterfalls (check out a few pictures here.)  Our recent good fortunes landed us in a cozy little cabin on the banks of the Skykomish river in the town of Index — courtesy of our generous neighbors Barbara and Sara.  Thanks to everyone for making it possible!

Finally, upon return we linked up with our old friends Daniella and Gabe, along with their son Rafi, who stayed in our basement until leaving to go back to Oakland yesterday.  Lucas and Rafi hadn’t seen each other for over a year, and their second meeting didn’t go quite as well as their first (check out this funny video of the boys in June 2010) as Rafi’s high energy was tough for a guarded Lucas to handle.  But this time they hit it off, as the photos below demonstrate.  From kisses to brushing their teeth together, Rafi and Lucas — despite being about as different as a couple 2-year olds could be — became friends over the four days they were together.  Daniella and Gabe were also amazing with Lucas, patiently figuring out which book he was asking for and reading them over and over again.  And to top it all off, a few friends joined us for a fun 4th of July barbecue on Wednesday.  What a week!!