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