Lucas Camilo

We’ve mentioned Lucas’s primary passion — dinosaurs — quite a bit on this blog.  But you may not know that he loves music almost as much as prehistoric creatures.  Lucas loves listening to music at home, and he constantly calls out the playlist when we’re in the van.  (If you wonder why our most current music knowledge is the release date of the new Casper Babypants album , it’s because Lucas hogs the stereo.)  And for two years we took him to Music Together classes with a fabulous local teacher.  We’d sit in a circle with kids mostly younger than Lucas and sing songs (parents sang, kids did whatever they wanted), dance around like trains, pull imaginary persimmons out of our pockets, and bang away at instruments.  Lucas loved it, and he’d sing all the songs at home, though at music class he was usually quiet.

He had sort of aged out of Music Together a while ago, but we kept going until kindergarten made it impossible to go.  And then I saw a little sign up for a family community choir.  I thought Lucas would love it, though I worried that all the extra noise we bring (suction and vent can be quite loud, especially when everything else is quiet) could be awkward.  So I wrote to the choir director and asked if the choir could handle some unusually loud machine noise, and she said “no problem!”

So Lucas and I (and Burke when he can make it) joined the choir.  And its awesome.  There are usually just five or six families with their kids sitting around singing folk songs, or sometimes pop songs — last week one of the older girls requested a song that is apparently on the radio all the time (like I said, I know nothing beyond Casper.)  And we sang True Colors, Cyndi Lauper’s super hit from the 80’s.  The choir director is musically amazing.  She gets the group, most of whom have limited musical experience or talent, to sing some pretty complicated rounds.  And she is so welcoming to Lucas, making time and space for him and his unique sounds, and celebrating when she notices he’s singing.  Or even trying to sing.

The fact that he’s trying to sing along is the amazing thing.  Lucas can be shy when he’s not among friends or family.  For example, during the first few weeks of kindergarten he supposedly only said a few words.  In two years of music class, even when he knew every word to a song, he almost never sang in class.  And this all makes sense to me.  He knows people have trouble understanding him.  He has a quiet voice when he’s sitting up.  He can feel shy, but physically has no way to move himself away, so not speaking or singing is his only way of shrinking away.

But on the very first day of choir, he sang along to This Land Is Your Land.  Then he listened for the rest of the hour, but I was still beaming with pride.  The next week he sang along to two songs.  And then last week we did a call-and-response song that went around the whole circle.  We had done it before and I’d sung Lucas’s part for him.  This time I kept whispering in his ear “are you going to sing?”  (I actually dread this song because the key is hard and I sound terrible when I sing my solo response part.)  The whole choir sings “Hey Krista,” and then I have to sing back “I think I hear my name.”  And then that repeats, and then one more line where you “pass” the song on to someone else.  Well.  We were going around the circle, and then the person next to Lucas went.  And then the whole choir sang “Hey Lucas.”  There was a pause.  And then his tiny, sweet, so-absolutely-unique voice sang back out “I think I hear my name.”  My heart exploded I was so proud of him!

When he passed the song on to me, I couldn’t help but laugh at myself.  If Lucas can do it — with the physical challenge of simply making sound around a trach, and knowing he sounds different than everyone else, and being a shy kid — I certainly can get over my hang ups about my less than perfect pitch!  I mean, I’m still not planning on taking over the Seattle karaoke scene, but I felt so bolstered by Lucas’s bravery.

Lucas carried the momentum from all his spring break animal adventures into school over the last few weeks.  He continues to make gradual progress with his power chair driving and is also learning to use a special iPad set up to be used as a assistive communication device.   In classic Lucas style, he’s much more interested and amused by the idea of turning the communication program into a game, and especially loves stringing together long, repetitive, sometimes-garbled sentences and then playing them over and over again… all the while smiling proudly at his work and repeating the nonsense the device is spitting out, even hours later when we’re doing something different.

I’ve been thinking lately about some puzzling challenges and paradoxes in relation to Lucas’s behavior and development (this is Burke writing, by the way.)  Now, I’m not a social scientist or anything so this is not based on any scholarly research about childhood development, or disability.  Which is to say that I don’t really know what I’m talking about.  But as Krista and I often find ourselves observing and talking about the weird, fascinating, and sometimes frustrating contradictions of Lucas’s personality, I figure its worth sharing a little…

One example is how Lucas relates to other people, especially in groups.  To begin with, communication is difficult for Lucas because of the weakness related to his disability which makes it hard to be in a position to see what’s going on and then communicate about it, and also leads to him having a quiet voice, slurred speech, and a limited ability to carry on longer conversations.  (Ok, that last one is an understatement, but we’ll get to that more later…)  A few weeks ago Lucas went through a very tough stretch in terms of hanging out with other people.  The low point for me was our attempt to take him out to a Jewish seder that a bunch of our friends had organized.  It was such a great community event with lots of people who know Lucas and were excited to see him.  But after about five minutes he was done, constantly on the verge of tears, demanding to go home, eventually agreeing to read books with the awesome childcare volunteer Mollie but still just barely holding on.  A few minutes later, though we had to leave shortly after the program got started and it felt disheartening, for me at least.  As soon as he got back in the van, Lucas was happy as could be.

Events like this had us talking and wondering – what is that frustrates Lucas about these interactions with other people?  Is he starting to recognize the limitations of life with a disability?  Maybe sometimes he just doesn’t have the energy and patience to try to communicate.  Or is it just a typical phase for a kid his age, throwing tantrums when he doesn’t get his way (in this case he had made it clear from the beginning that he would have rather been at home reading books).  It’s tough to know because Lucas doesn’t verbalize to us any of his emotions, or explain the reasons behind his desires.  But he does get pissed when he doesn’t get his way.

Just when I start to wonder if we’ll ever be able to participate in a group activity with Lucas (other than going to the library, zoo or aquarium) he had a couple of great interactions.  We had some friends from CISPES over for a “Education Night” involving some political readings, and though he preferred to watch Winnie the Pooh for the first part of the evening, we got him in his chair before bed and he proceeded to wow the crowd with his ability to spell the names of  all the characters who roam the Hundred Acre Woods.  He was so proud of himself, beaming as he belted out the letters, as if on the verge of winning the spelling bee.  He had a few other great interactions in the ensuing weeks, including a poltluck at our house last Sunday and a  service at the Valley and Mountain church in south Seattle.  So we know that he can do it.

You can see the baffling contradictions of Lucas’s development at these moments.  On one hand, he’s keenly aware of people around him, repeating something that someone says a moment later – with the perfect intonation and in a way that makes it obvious that he knows he’s making a hilarious joke, and one that comes across as advanced for a four year old.  Or, he’ll go through and name a type of insect that starts with every letter in the alphabet from A to Z (Harlequin cabbage bug anyone?)  He can almost do it with dinosaurs too, incidentally.  The point is, he’s a smart kid.  But then someone asks him what he did at school that day and he can’t answer.  Maybe it’s just that he’s refusing to answer, but the way he responds it seems like he genuinely doesn’t know.  It’s kind of a mystery.

What I can say with certainly is that his cognitive development is not typical.  We used to say that he has a physical disability but that mytubular myopathy does effect his mental development.  But even though I still say it sometimes, I don’t actually think its true.  Nor do I think he falls on the autism spectrum (though we have at times considered it).  His development delays are pretty unique… something that deserves more description as I’m curious what other MTM parents (as well as parents of kids with other disabilities) have to say about it.  People sometimes hear us describe this and try to minimize what we’re seeing, saying it’s no different than a typical four year old.  The truth is, some of these things are regular-old-kid behavior… But we also see things that seem socially, emotionally, or cognitively unusual for a kid his age, and we want to acknowledge and even be curious about that part of Lucas, too.

The most obvious example is his continued insistence on using the second person to refer to himself – and conversely, the first person to refer to someone he’s talking to.  So Lucas will say “you want to read a book!” or “you’re going to go to school today” when referring to upcoming activities that he plans to engage in.  When we correct him he’ll say “I want to read a book” drawing out the “i” sound so as to emphasize the change.  But then moments later he’ll be back to saying “you.”  And whenever I do something funny that makes him laugh but that he doesn’t totally understand he’ll say “What did I do??”, meaning, of course “what did daddy do?”  It’s our own fault, in a way, because a few years ago when he started doing it we cracked up every time, thereby reinforcing the behavior, especially since Lucas loves to make a good joke.  But now he’s months away from his 5th birthday and still doing it!  Krista and I, as well as his nurses, are used to it, and we often correct him but sometimes just continue with the conversation.  For others, its jarring and contributes to the challenge of communicating with Lucas, which already requires a lot of patience.  His favorite way to answer a question is “you want me to tell you!” which is basically his way of saying “I don’t know” but literally means “I would like you to tell me the answer” with the pronouns reversed.  Trying to explain this to the person who has just asked “what’s your favorite color Lucas?” is kind of like doing a rendition of “who’s on first.”

The “you want me to tell you!” refrain deserves special mention because it is the single phrase that Lucas most often says – by a longshot.  I’ve started to think of it as an expression of his confusion – and perhaps, incipient frustration – with his disability.  Lucas is prevented from doing so many things because of his extremely limited mobility, and I think that he’s starting to realize that and internalize the frustration that it leads to.  The exasperation I sometimes hear in his voice when he says “you want me to tell you!” conveys that sense of immobility.  It’s like he’s saying, “I have to ask you for everything else – books, game pieces, moving my arm when its stuck on the couch – so I might as well just get you to answer that stupid question for me too!!”  Who knows, I’m probably reading too much into it, but there’s no doubt that oftentimes when he says “you want me to tell you!” he in fact has an answer to the question and chooses not to say it.

As I’ve been writing this post over the last few days Lucas has been doing especially great.  He’s just sooo happy sometimes, and his smile and joyful high-pitched voice at those moments is infectious.  My parents and I took him to the Burke Museum on Sunday and after checking out the small dinosaur exhibit we spent nearly an hour playing with little plastic dinosaurs, and he was ecstatic.  Then we picked up some dinosaur quiz cards from the bargain rack at the bookstore, and one of them asked “what’s the longest name of any land dinosaur?”  The answer, of course, is Micropachycephalosaurus.  I told Lucas that, he repeated it, and we went on to the next question.  Later that night I asked him what the longest dinosaur name is – and without skipping a beat he said “Micropachycephalosaurus!”  And this from a kid who still doesn’t use “I” when referring to himself.  Go figure.

Happy New Year!  We’ve been busy, mostly enjoying the holidays and a bit of a break from time online.  So we may try to recap our last few weeks in a couple posts.  For now, a bit about Christmas.

As Lucas gets older he has more complex thoughts but still very unique ways of expressing himself. We were in the van driving to Beaverton, Oregon for Christmas when we pulled off a rural I-5 exit to give him some food. Things were going relatively smoothly on our drive, but the two of us were also in a bit of a zone – heads down, focused on our somewhat messy layout needed for tube-feeding on the road. Out of nowhere, Lucas declared (referring to himself as ‘you’), “You are so excited to go to Grandma’s house!”

We both laughed because it was so out-of-the-blue, and yet also so contextually appropriate. Lucas generally doesn’t talk about feelings, his or anyone else’s, and he rarely expresses looking forward to something other than by giving instructions that will move us from here-to-there.  (Ie. “you want to get up in your chair” is his way of telling us he wants us to put him in his wheelchair because he wants to be somewhere else.)  Many of you will assure us that the 4 year olds in your life don’t process feelings verbally either. But Lucas seems to be extra limited, confused, or uninterested in this area of communication. He rarely expresses “like,” and he may have never used the words “don’t like” together. If you asked him how he was doing, through most of 2013, his answer was “yeah.” He now says “happy,” but it seems equally rote. Maybe he’s a social genius and realizes most of us are less-than-fully-authentic when we answer “how are you.” But that seems unlikely.

Christmas seemed to unleash new kinds of joy in Lucas, and at various times – sometimes with words, and sometimes just with extra sparkle in his eye – Lucas has expressed his utter delight at the season.  The day we decorated our little Christmas tree he was a bundle of exuberance. For every ornament we pulled out, he’d ask/exclaim, “What’s THAT one!?!?” He’d inspect the ornament and then either direct one of us where to put it, or we’d lift him up and he’d place the ornament himself. For the rest of the month, every time he’d see the tree, he’d tell everyone “you did such a good job on the Christmas tree!” (remember: “you” = “I”).

On the last day of school there was a “holiday” party for all the kids in special ed. All of the 50+ kids, teachers, parents and aids gathered in the cafeteria, shook bells, sang Christmas carols, and got a visit from Santa. Each kid got to go up and sit on (or near) Santa’s lap. Last year Lucas was very nervous about the whole thing and barely tolerated getting near Santa. This year, before Santa was even comfortably seated in his chair, Lucas shouted out from the back of the circle “I love you Santa!”

We’ve both felt winter’s darkness at times this year, so it’s been nice to have Lucas fully in love with the better parts of Christmas: the lights, the candles, and the singing. He somehow doesn’t care much about presents, and he couldn’t even make a list for Santa when we asked him. (We didn’t ask very insistently – just to prove to ourselves that he really didn’t care. He eventually said he’d ask for stickers.) And it helps that our families are flexible. We celebrated pre-Christmas with brunch and a walk with the Stansbury side of the family a few days early, and our time with Krista’s family was restful – mostly focused on reading books with Lucas and taking walks around Grandma’s neighborhood.

When we got back to Seattle, Lucas and Burke returned to their routine of getting Lucas up in his stander in the evenings and spelling words with his magnet letters. Their game includes picking a category – animals, shapes, etc – and then trying to sound out often long, complex words. One night recently Burke got Lucas got up in his stander and Lucas exclaimed, “You want to spell feeling emotions!” So Burke helped him go through all sorts of possible feelings: excited, bored, tired, mad, sad, surprised, and, of course, happy.  Which Lucas certainly was.

For the first time since we moved here, we woke up to a layer of snow on the ground this morning!  Krista taught an early morning yoga class and got home in time for a still pretty early morning snow walk.  We’re happy to report Lucas’s chair handles an inch and a half of snow well.

Lucas is obsessed with air quotes these days.  He doesn’t understand what they mean, exactly, but he hears the emphasis — maybe even understands the intonation of a question, or sarcasm, or something.  He loves it.  He uses them to make any point, to make a joke, or just to liven up an already celebratory morning.  He heard Burke comment that the snow was nice but not exactly a blizzard, and he lit up.  So we walked around with Lucas exclaiming “It’s not exactly a ‘BLIZZARD’!”  He even insisted that we take off his mittens so he could properly do air quotes while saying “blizzard.”  Of course, it wasn’t until we got home that he asked what “blizzard” means.

We wish you a wonderful winter solstice tomorrow!

(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…

It’s been a while since we’ve had a regular Lucas update, especially since the last one was a long-overdue review in Spanish (for our friends in El Salvador, among others.)  But it’s been a great month since his birthday, as we’ve been taking full advantage of the beautiful weather in Seattle.  Among the highlights were a trip to Snoqualmie Falls (overshadowed only by the nearby dog park); a Labor Day rally in which Lucas learned to chant political slogans and met the mayor; going to the zoo with Gramma and meeting a baby giraffe; having dinner and talking a walk in the park with our friends the Bowers, whose son Chris has the same disease as Lucas; and participating in a anti-war vigil at our neighborhood park.  See pictures below.

Among the most exciting recent developments is that Lucas is learning to read!  For so long he’s been obsessed with letters, language, and books.  Over the past few months, he’s started to put it all together and sound out words, from 3 and 4 letter words in his “Bob Books” to occasional longer words, to reading street signs when we’re out rolling around the neighborhood.  It’s so cool to watch his fascination and determination with reading, and so fulfilling to see his pride in sounding out a long word or making a connection between something he sees in real life with something he’s read about in a book.

Lucas’s focus with reading can be really amazing to witness.  We can stack up a box of Bob Books – about 12 in all – on the couch next to him and over the course of a half hour he will read them, one-by-one, carefully turning each page and meticulously sounding out each word.  When he gets to the end of a book he exclaims “nice job!” and slams it down on the floor… then slowly reaches for the next book.

On Monday Lucas starts his second year of preschool and needless to say they won’t be teaching reading to Lucas and the other 3, 4 and 5 year olds.  But Lucas gets plenty of attention to reading when he’s at home.  School promises to be an opportunity to interact more with other kids, something that is still a huge challenge for Lucas.

Another exciting development is that Lucas has decided that he likes yoga.  (As long as there’s a dinosaur, or spider, or panda bear involved, that is.)  It all started one day when Krista did a few twists and yoga activities with Lucas and he loved it.  Needless to say, given that she’s a yoga teacher it was not the first time that Krista had tried to get Lucas into yoga… but it was the first time that he complied.  She even got him onto his tummy (which hasn’t happened in years) and practiced “wagging his tail like a dog.”  Check out the video:

And here are some shots of the Snoqualmie trip:

And of Lucas and Chris playing hoops:

And from the zoo!

 
And at the Labor Day rally & picnic (w/ the mayor):

We are behind in posting here, and it’s hard to know where to start with a Lucas update these days.  We’ve been taking full advantage of our wheelchair van super-mobility, feeling lucky to have such great friends and family to hang out with, and so many beautiful parks, beaches, and mountains to explore in and around Seattle.

Since we’re not going to write about it in details, it feels worth making a list of places we’ve taken Lucas, to mark (if just for ourselves) how totally mobile our life is right now.  Two years ago it felt like most of our trips out of the house were to the doctors office, and even those trips were rare.  But just in the last 15 days we’ve gone to:

– Paradise lodge at Mt. Rainier for the weekend, with Gramma Susan, Charles, and Aunt Megan

– The library, music class, and the post office (Lucas loves stamps, it turns out)

– The Arboretum and Seward Park with Tio Sha, who came to visit last week

– A long meeting with the school district to finalize Lucas’s IEP (thanks to Stef for coming along to entertain Lucas so the two of us could participate in the meeting!)

– Hood Canal this weekend, with three other families and their many small kids

The hours in the van haven’t been Lucas’s favorite, but as long as he’s not totally exhausted he tolerates the longer-haul trips.  But of course sometimes he is exhausted, so that has meant a couple hairy moments, with Lucas looking absolutely misearble, and us trying to discern if he’s having trouble breathing or just grumpy.  And we’re still not sure all the time, and it feels terrible to think you’ve put your kid in a place that is painful… so there have been those moments too.

An upshot of the van is that it came equipped with a working sound system (unlike our old car), so Lucas can now request his favorite song on repeat.  Which can drive a person crazy, but then if he doesn’t get it he’s able to cry like he’s having trouble breathing, so we hurry to put it back on.  And miraculously the “Sticks” and “Naranja” songs sometimes seem to clear his airway :)

Speaking of the “naranja song,” Lucas’s latest obsession is Spanish.  He suddenly realized that some of the books we have are in Spanish — books that for the last year he hasn’t wanted to hear — and he got excited.  It started with La Oruga Muy Hambrienta (The Very Hungry Caterpillar).  He memorized “una manzana” (one apple), “dos pears” (two pears), “tres ciruelas” (three plums)…  Then he went on to memorize the caterpillar’s entire Saturday menu (un biscocho de chocolate, un helado, un pepinillo, un trozo de queso suizo, etc.)  It may seem hard to believe, but Lucas now has the entire book memorized in Spanish.  He proceeded to counting a week later, and has now mastered going all the way to 15 in Spanish, and he’s close to 20 (see the video above of when he first got the counting bug).  Each time he gets to where he’s going, he finishes with such glee.  His counting sounds like this: uno, dos, tres, cuatro, cinco, seis, siete, ocho, nueEVEEEE, DIEEEEEEEZZZZZZ!!!!!!!  He does the ASL signs (or tries) along with the number, and shakes his fist in the sign for 10 along with his ebullient “DIEZ!”  It’s pretty amazing to watch.

So his favorite question these days is “how do you say ____ in Spanish?”  We’ve gotten “how do you say scoop in Spanish?” (sacar).  “How do you say plunger in Spanish?” (embolo, for a syringe).  “How do you say walrus in Spanish?” (el morso).  This is testing even our vocabulary, so he’s learned what it means when we say “do you want me to go look it up?”  He always says yes. He’s even asked, “How do you say Spanish in Spanish?”

We have a number of friends who are raising their kids intentionally bilingually – something we maybe thought we’d try, long before Lucas was born.  And then there were so many other things going on, we never got around to the Spanish on any regular basis.  So although this fascination isn’t exactly turning us into a bilingual family, it’s thrilling to see him pushing us, and even getting experimental.  The other day he was trying to tell us something that we didn’t understand, so we asked him if he could “use another word,” (a cue his speech therapist has been working on.)  He sort of sighed and declared, “how do you say Butterfly in Spanish!”  He had been pointing at his temporary tatoo, saying “Mariposa tatoo!”

And then we got out his Hungry Caterpillar playing cards (yes, they exist), and Lucas was looking through them, naming the fruits and other foods.  At one point he held up a handful or cards with the caterpillar them and said admiringly and to no one in particular, “Look at all those Orugas.” He looked like a king counting his gold… in Spanglish!

And speaking of counting your blessings, there’s wonderful article in the Atlantic by a mother of a son with disabilities.  She writes beautifully about the feeling of fullness, of having everything you need, even when from the outside your life looks hard.  Even when your life IS hard.   You can read it here.

We keep meaning to share the many resources that we love, so look out for some more book/article review soon.  And if you have great resources on parenting or disability or parenting and disability, send them our way and we’ll compile a resources page.

Lucas shares flower spells with Nonna and Papa

Lucas has been getting lots of quality time with his extended family lately – stop-ins from his cousins and Aunt Ashley, a visit from Portland by Gramma Susan and Charles, and multiple reading/fetch sessions with Nonna, Papa and Bruno (the annoying dog who travels everywhere with Burke’s parents).  Lucas really enjoys having his family around, as everyone brings something different to the table.  Aunt Ashley teaches him sayings like “hang loose!” and “cool, dude!” which he repeats with relish; Madden, Tya and Ellody are a whirlwind of energy that Lucas (mostly) enjoys observing; Gramma Susan is a tireless reader who also introduced him to a great set of flashcards; Bruno plays fetch (for a few minutes at least – he doesn’t have much endurance); Nonna knows all the names of the flowers we find in the neighborhood and can quiz Lucas on them; Papa also reads lots of books and is a darn good speller (something Lucas very much admires).

Hanging with Gramma and Charles by Lake Washington

The recent Susan and Charles trip was highlighted by the aforementioned flashcards which Lucas preceded to devour.  For a 2-year old Lucas has a remarkable appetite for words and spelling.  Whenever he meets someone these days he quickly tells them the first letter in their name; he also prides himself on knowing more than a dozen penguin, shark and hummingbird species (respectively), and he’s well on his way to identifying all the flowers in our neighborhood.  What seems to drive all that is a love of words, something especially remarkable in a kid who doesn’t have the strength in his facial muscles to fully form most words.  At any rate, it was no surprise that Lucas was so excited by the flashcards.  Within 24 hours he had memorized all 44 cards, able to spell and identify each word.  Gramma Susan would hang him a card, quiz him and then upon getting the correct spelling he’d slam it down and exclaim “anuh-der one!”

Finger painting with Madden!

Krista was gone on a 80 mile bike ride this weekend (more on that later) so Burke’s family came over for Father’s Day brunch.  As often happens when other young kids are running around, Lucas at first buried himself in a book to avoid the commotion.  But eventually he sat up in his chair and got into finger painting with his cousins.  The whole gang went to the park together and Lucas enjoyed watching the frisbee get tossed around on the beautiful, sunny date.

With Friends at the Caring Across Generations resolution City Council hearing

This last week featured a number of other exciting events.  On Tuesday, while Lucas was home napping with his nurse, we went down to the Seattle City Council to support a resolution around caregiving that was drafted by the national Caring Across Generations campaign.  The campaign – which we originally joined back in DC – has a well-conceived strategy of bringing together caregivers with those requiring long-term care.  It demands better wages and benefits for the growing industry of direct-care workers, while also seeking to strengthen support and programs for people with disabilities and the elderly.  Burke was set to testify but the time ran out; we plan to return in another week for the full Council hearing in which one of us will testify.

Then on Thursday we took Lucas to his first play, a production of the Hungry Caterpillar (and other Eric Carle works) at the Seattle Children’s Theater.  At first Lucas was totally put-off by the scene at the theater and we only avoided a total meltdown because we happened to bring a book that he could bury himself in.  Once the lights dimmed and the colorful puppets came out Lucas settled down, and from the comfort of Burke’s lap he watch the entire play through.  He even predicted certain parts of the play that he knew from the book, shouting out “2 pears!” or “4 strawberries” before the fruit appeared on stage for the hungry caterpillar to eat.

Finally, Krista hit the road early Saturday morning for a 2-day, many-mile bike ride.  The annual Solidarity Cylers ride (the traditional of which we helped start back in DC) was a fundraiser in support of the local Seattle chapter of CISPES (it’s not too late to donate!)  The riders cruised across Bainbridge Island and stayed at a historic camp for anti-nuclear activists called Ground Zero.  The ride was wonderfully successful – bringing together people with all different levels of experience with cycling (this ride included a nine year old on a one-speed Huffy) to enjoy the outdoors and the great company of other activists, all while raising money for a great cause.

And for an encore this evening we made our way out to a party at the 41 Legs Urban Farm which our friends have started here in Seattle just a couple miles from us.  On their small urban plot they have a greenhouse, many raised beds, flowers, rabbits, ducks, chickens, and pigs.  Lucas loved checking out the flowers and all the animals, but he was especially smitten with the dozen or so ducks and Babette, the pig.  And on our way home, Lucas remembered the date and (with little prompting from Mommy) told Burke that he loves him very much, and “Happy Special Daddy Day!”, and that he’s his “favorite Daddy!”, and the “Best Daddy in the World!”