Lucas Camilo

Lucas enjoyed spending thanksgiving this year with both of our families up on Whidbey Island.  The weather was great (a rarity for November in the NW) with the snow-covered mountains rising above the calm skyline above the Puget Sound.  We took a few walks around the nearby Greenbank Farm, which Lucas will mostly remember for his fortunate encounter with a 120 pound puppy (“that was a giant puppy!” he kept saying in retelling the story to all who would listen.)

Everyone prepared some food on Thanksgiving including Burke’s famous tofurkey, made from scratch and including a vegan, gluten-free stuffing.   There was a “real” turkey too.  And Lucas benefited from all the cooking by getting some special treats in his tube formula.  Perhaps best of all was watching Lucas and his cousin Madden read together on the couch during our last day on Whidbey Island.  It’s sometimes hard to find ways to get Lucas and his fast-moving cousins interacting, especially without too much coaching or facilitating on our part, so it was awesome to see.

It’s been a long time since we’ve chronicled Lucas’s life — other than our visit to the firehouse on the anniversary of his accident — so here are a few more recent tidbits in no particular order:

• Our friend Sha was in town recently and his visit included a snazzy Lucas haircut and some awesome new Lucas yoga moves that Krista and Sha worked as a team to develop.  (See video at the bottom of this post.)  Sha used to live up the street from us in Washington DC and has known Lucas since he was a few days old, long before he even made it out of the hospital… and though Lucas sometimes doesn’t remember old friends from DC, he definitely remembers Sha, and they always have a blast together.

• On Saturday we tried to take Lucas to the small, local movie theater.  Unfortunately, the show ended up being on the second floor (with no elevator) so we couldn’t watch the film.  Lucas was a little disappointed since we’d really hyped up the movie, and it was one of those hard disability/accessibility moments.  The people at the theater felt horrible and gave us a gift certificate and offered to do a special screening on the main floor just for Lucas the following week.  That was really nice.  But even better was going down the street to grab a beer and some pizza and having Lucas be in the best of moods.  He was cracking us up doing his harbor seal impression, and we decided that it was meant to be that we didn’t make the movie.  And then we went by our friend Scott’s Hanukkah party and Lucas enjoyed that too, and made some new friends.

• The last few times we’ve been to the park we’ve brought Lucas’s baseball bat and a tennis ball and played a game in which he pitches (by dropping the ball over the edge of his wheelchair armrest), Burke hits, and any kids who are around chase down the ball and run it back in to Lucas.  As we said before, its tough to find games that Lucas can play with other kids and so its satisfying when we pull it off.   The only problem is that we’ve seen some tears and squabbling amongst the ball chasers, including Lucas’s cousins.

• As much as Lucas revels in the attention of family and friends visiting, we enjoy it, too.  When Nonna, Papa, Grandma, Aunt Megan, Aunt Ashely and uncle Brandon are around for a couple days, it means we get to step away from constant book-reading/puzzle-fetching duty with Lucas to enjoy a bit of uninterrupted time for cooking, magazine reading, or even starting a knitting project!  Susan and Megan spent an extra day in Seattle with us, and Lucas was very excited to take Grandma to the library to borrow more books to add to his overflowing collection. His current top pick is A is for Autumn.

(Note: These days Lucas often expresses his affinity for something by singing a bar of his favorite song, “Hey Lolly” with the words changed and himself as the protagonist… so that’s what’s going on in this video.)

Despite a bit of a cold, Lucas was very excited to go to school yesterday in costume!

Lucas had fun showing off his costume to his teachers, and during physical therapy he did some extra dinosaur spins in his power wheelchair.  He came home and got rested up before heading out for a trip around the block to trick-or-treat with the neighbors.  Since Lucas doesn’t eat candy, the whole “trick-or-treat” part of Halloween was new.  But we figured we’d give it a go, since the social interaction part of the knocking on doors could be fun for him.  We did just a couple dress rehearsals, then started with our next door neighbor.  Dave opened the door, and we all paused.  We gave the “what-do-you-say” prompt, and Lucas said, “I love you Dave!”

He eventually got the ritual down.  A box of Lemon Heads  were his favorite (“it looks like a yellow rectangle!”), since if you shake the box they double as an instrument.

It’s taken us a while to get settled back in Seattle after the MTM family conference.  After a very busy week catching up we finally have some time to write more about the experience.

As we said in a previous post, the highlight of the journey for us was meeting other families and being in a space where we could learn from each other.  We’ve heard that some of our MTM friends felt let-down after leaving the conference and perhaps that’s true for us as well; the sense of connection and belonging that we experienced during 3 days in a Minneapolis hotel is not something we feel every day.  The funny stares when we fire up the suction machine or the quick look away of people who can’t bring themselves to witness Lucas and his ventilator – all that is real and it’s only when you spend a few days surrounded by people totally comfortable with vents and suction machines (not to mention all the other equipment) that it feels disconcerting to be back in the role of “other.”

But it was more then just the fact that people were accustomed to a kid like Lucas.  It was celebrating and laughing as we told stories about our life with Lucas, and seeing a look of total understanding on the face of someone else.  It was also important to be able to talks about the harder parts of life, the frustrations and challenges, and even grieve a little.

So yeah, the conference was great for us… but, as people have asked since we got back home, did Lucas have fun?  From what we could tell he also enjoyed himself (he often said “You’re at the conference!  We’re in Minneapolis!”) and though it was tough at times to get him interacting with the other kids, we’re very glad that we figured out a way for all of us to go as a family.  He was in such a good mood the opening night of the conference that we took him to the hotel bar with another family to watch the Mariners-Twins game on the TV.  Needless to say it was a pretty funny sight to see two MTM kids and all their gear sidled up to the bar.

It was interesting to meet the other kids and learn about similarities and differences with Lucas.  For example, Lucas still refuses to use the first person when referring to himself  and we learned this was also true of a couple other kids.  Andy is a smart kid in the 5th grade who still refers to himself in the 3rd person (Lucas prefers the 2nd person as in the title of this blog post).  A lot of the kids tend to be very focused and skilled at memorization and attention to detail.  They also have trouble expressing emotions.  Indeed, a couple parents mentioned that the idea of their kid being on the autism spectrum had come up more than once.  This is something we’ve also started to talk about lately… but the doctors and specialists are so focused on Lucas’s respiratory system and physical health that sometimes it feels like no one bothers to noticed that he also has a brain…  and that his cognitive development is a little quirky.  The parent-to-parent session at the conference gave us a great opportunity to talk about all of this.

One final thing we noticed through observing and interacting with the other boys is that Lucas tends to be on the lower end of the spectrum when it comes to muscle strength – most of the other kids, for example, can sit up on their own and/or hold their heads up (Lucas needs assistance for both).  This was hard for us, and we couldn’t help but feel envious at times and wish that Lucas was just a little bit stronger.  On the other hand, he tends to be on the upper end of the spectrum when it comes to communication skills.  We do feel very fortunate about his ability to verbalize and say what he wants.

Going back to the medical research, this was another area where we found ourselves with mixed emotions.  On one hand, its very exciting to see all the progress that has been made (we mentioned some of this in a previous post back in May).   We knew a lot of the general information about the MTM research, which is advancing in two realms: gene transfer therapy and enzyme replacement therapy.  The former has made the most progress in the last year, in particular through trials involving MTM-affected dogs.  There is no assurance that successful trials in dogs will lead to success in humans, but the research has come far enough along that private biotech companies and venture capitalists are jumping into the mix.  So in addition to the doctors we heard from some of the leaders of these companies who plan to move the research towards clinical trails in humans – which is to say that some of the kids at the conference could someday be the beneficiaries of such a treatment.

Even as we worked through our skepticism about the interplay of capitalism and disease research, we found ourselves cautiously optimistic, but perhaps not as exuberant as some others in the room.  Clinical trials are at least a few years away, and an actual treatment on the market is a few years beyond that.  What’s most important for us is to keep doing everything we can to make a good life for Lucas in the here and now, while also supporting advocacy and accessibility for people with disabilities.  We’re grateful for all those who are so invested in producing a treatment for MTM, and for everyone who challenges those aspects of our society that tend to limit the lives of people with disabilities.

One final highlight of the conference was the variety show on Saturday night.  Lucas was up first and was totally ready to sing “Take Me Out to the Ballgame” (he’d been practicing for weeks)… until Burke put the microphone in front of his face.  There was a long silence as we waited for him to start singing, broken by Lucas pointing to the mic and saying “you wanna put that away!”  The rest of the crowd ended up joining in for a rousing rendition of the song, and though Lucas pretty much refused to sing, he did motion “1-2-3 strikes you’re out!” during the final stanza.  And later in the hotel room he redeemed himself  (see video at the end).  There were other great performances, including a 19-year with MTM lip-syncing a Bill Cosby monologue, as well as some of the doctors and researchers doing a sing along of John Denver’s “Country Roads” (a favorite of Lucas as a baby).

Finally, we want to thank the organizers of the conference (Erin, Mark, Shannon and Marie) who did an amazing job making it happen, as well as others like Paul and Alison Frase (co-founders of the Joshua Frase Foundation) who have helped make this coming together possible. There was so much that was great about the conference that we find ourselves scheming about ways to continue connecting in person with the families that we met, as well as others who couldn’t make the trip to Minnesota.  Already there are discussions about a west-coast MTM gathering that would focus entirely on hanging out and sharing between families.  We’re looking forward to it…

“Take Me out to the Ballgame”

Another video of Lucas and mommy playing baseball in the kids area at the conference:

We made it back safely to Seattle.  Lucas was exhausted by the time we got off the plane, picked up our luggage, ran to get the van, and finally made it back home after 10 pm (midnight Minnesota time!)  But he did great and everyone was relieved to be home, and inspired by the trip.  We’ll write more about the conference soon but wanted to share a few more of our pictures from the trip in the meantime:

(Burke writing) Krista is off on a 80-mile bike ride today!  Lucas and I were there this morning to cheer on her and about 20 other people as they hit the road.  The ride is the annual “Solidarity Cyclers”, a fundraiser for the Seattle chapter of the Committee in Solidarity with the People of El Salvador (CISPES).  You can still sponsor Krista (or me for that matter as I’ll be joining for day 2) by giving through Paypal at the bottom of the registration page.  Note: Krista will have to explain about the eagle in the picture once she returns.

Lucas is napping now so I thought I’d take a few minutes to reflect on some of our recent adventures.  We’re off to a Mariners game later today so I’m going to let him take a long nap…

As Lucas has embarked on summer vacation we’ve had to be a little more creative about how we spend the days – its amazing how 3 1/2 hours a day, four days a week of school suddenly seems like a lot of time when you take it away.  Lucas still has nurses most weekdays so that helps both of us get our work done, and having someone around to take Lucas out if the other one of us is busy or out of town is also really nice (Krista just spent 4 days in Portland for a wedding and time with friends, for example, and I was grateful to have support from a nurse a few of the days).

Among the things we’ve done lately are trips to the lake (when the weather allows it), the zoo, the library for some Spanish-language readings, a birthday party, and a brilliant two-day excursion to a cabin in the woods near the town of Leavenworth.  The latter was a particular highlight for Lucas as he was able to cavort with dozens of hummingbirds, 3 dogs, 2 horses, 2 donkeys… and we even saw a bear!  Our friends Eli, Lili and Pax were amazing hosts and indeed it’s trips like this that make us very happy to be back in the Pacific Northwest.

The other day Krista and I were talking about how fortunate we feel to be getting out and doing so much with Lucas… and having fun while we’re at it.  Part of it is that we just want Lucas to be able to enjoy his life as it is now – his fascination with animals, books, flowers, fruit in the grocery store, or whatever his latest passion may be.  This is by no means a given.  For one thing, he’s been extraordinarily healthy while many of his medically fragile peers often struggle with frequent illnesses and hospitalizations.  And indeed every time we venture out there’s a certain level of risk involved.  Just yesterday driving home from the zoo we had to pull over and do an emergency trach change on the side of the road since Lucas was having trouble breathing.

There’s definitely some choice and determination that goes into in doing all these outings.  We could, for example, be focusing a lot more on learning to drive his power chair – something that remains a big challenge – or practicing communication with his Dynovox speech device.  But come on, its summer!  Lucas deserves to be out mucking it up with the best of them, even if his style, and methods, and the precautions we have to take, might be a little different.

Meanwhile, Lucas has had a number of appointments with specialists lately – all of which have gone fine – and at some point we’ll do an update on such matters… not to mention his power chair progress and other things he’s working on in therapy.  Speaking of chairs, below is a picture of Lucas enjoying a serene day at the lake in his new push chair, which has been an awesome boost to his mobility and stamina.  And some other recent shots as well…

Krista is in Washington DC this weekend and so it’s just me and Lucas.  We’re missing her but also enjoying ourselves in the good weather.  My dad (aka Papa) is coming over today and we’re going to have some quality boys time.  Lucas doesn’t like college football so I guess we’ll have to crack a couple cold ginger beers and watch “Polar Bear Polar Bear” on youtube repeat…

Yesterday Lucas and I spent the whole day alone together without interruption (except for a 45 minute occupational therapy visit in the morning).  It was both glorious and challenging.  By the end of the day the house was a minefield of crayons, markers, books, banana-stained rags, medical supplies, toddler clothes, dirty dishes, and more… I was so tired that I didn’t bother to clean up, just collapsed into bed to watch a movie once Lucas fell asleep*.

Though I was tired, I also felt really good.  Lucas was in a great mood, one of those days when the longer we spend together the better it gets.  In the afternoon Lucas was being especially hilarious, pleasing himself with simple things like removing and replacing the cap on the little insect-catcher.  After I had released the honeybee, spider, and lavender leaves, he would  look into the empty plastic container and say “No one’s in there!”  By the time I got the camera out he had settled down, and sometimes video just doesn’t do justice to Lucas’s ridiculous sense of humor.  But here you go anyway:

A day alone with Lucas also brings home the tough reality of caring for a child with acute special needs: your options are limited.  Krista has more experience with this since she spends more time with Lucas, and has been home alone various times over the last year especially (because of my work travel schedule).  She tends to be more adventurous, pushing Lucas to take excursions even when it’s just the two of them, fearlessly loading him and all his gear into the van for a trip downtown to the aquarium, or making plans to meet up with friends.  When she’s gone I’m inclined to hunker down at home with Lucas, since getting out and being social AND taking care of Lucas alone is complicated, to say the least.  We’re both fortunate to have a lot of support from family but nevertheless it’s tough.

Yesterday was so beautiful that Lucas and I couldn’t resist taking a walk in Seward Park, and then spending a few hours playing on the grass in the back yard.  The best part of the day, though, was lying down in bed together to watch the first half hour of “Finding Nemo.”  It’s really the only movie that Lucas will watch more than 5 minutes of, and last night he was enamored with the fact that it was Nemo and his dad swimming around together.  Each time there was a scene involving Nemo and Marlin Lucas would exclaim “Nemo and his daddy!” and then point right at my chest, with a huge smile on his face, and say “I’m a daddy too!” (he’s still got a little pronoun confusion).  By the time he fell asleep – and I took one look at the bombshell that was our house and decided to jump in bed rather than clean up – all I could think about was how damn happy it makes me to be Lucas’s dad.

(* Note: the movie that I ended up watching was Restrepo, an Afghanistan war documentary which I highly recommend, yet may seem like a strange choice given the feel-good, sentimental-parent mood I was in at the time.  Alas, it’s on my short list of “violent movies that Krista probably won’t watch with me”, and as we near the 11th anniversary of that war’s beginning it seems important to remind myself, in a visceral way,  how brutal and misguided war really is.  Perhaps it goes along with the sentimental parent thing after all, in so far as I long for Lucas to be able to live in a country that doesn’t dedicate a huge chunk of it’s shrinking budget to funding death and destruction… But I guess that’s another blog post.)

Can’t resist posting this picture.

Lucas was a bit grumpy all weekend long, but this afternoon he was back in great spirits.  The sun was out so we went to our favorite spot at the lake.  And after Mommy and Daddy took quick dips in the chilly water, Lucas agreed to get in too.  At first it was just going to be a quick dunk of the toes, but then he loved it.  Lucas got so silly he had us both near tears.

There was red playdough, clothes-in-cubbies, nervous parents, circle time, bubbles, the ABCs, introductions, teachers chasing run away kids down the hall, and lots more first-day-of-school mayhem.  And Lucas seemed to soak it all in.  He was cool through the parts he didn’t like (bubbles) and thrilled when the ukelele came out.  And right as the school morning ended – a full hour and a half earlier than his usual nap time – Lucas crashed.  If it all goes as well as today, or even nearly as well, this school thing should work out just fine.

Here are a few pictures from the day.  Pay no attention to the start date on the reader board — we were not two weeks late to school!

Lucas leaving the house with his little red book (Chicken Soup with Rice).

The arrival.

Daddy saying goodbye

Lucas may or may not have been happy to have his parents eager to pose with him.

Playing with blocks, with help from nurse Lauren.