Lucas Camilo

Yesterday Lucas lost his second tooth.  He got very excited about the tooth fairy coming, and kept asking us what she would bring.  His cousins had told us about writing letters to the tooth fairy, so when I (Krista) put Lucas to be last night I offered to take dictation.  I grabbed a small piece of scratch paper, but it turned out Lucas had a lot to say.  It was exciting to hear all his thoughts (and slow, because after I wrote each sentence, he would take the letter from me and read it, starting again from “Dear Tooth Fairy” each time.)  As the letter got longer I felt like I had this window – through more words than Lucas usually uses – into his thoughts.  And it occurred to me that he was writing his own sort of blog entry about early August.  So here it is.

Dear Tooth Fairy,

I lost my second tooth today.  Will you bring me a puzzle?  Please.  Thank you for the turtle.  I saw E.T. the walrus at the zoo and aquarium today.  And I lost my tooth at music class.

 I saw the sharks eating.  The elephants were eating grass.  I saw the tiger.  I like to do bowling.  E.T. swam right up to me.

I saw a friend who was playing songs at the festival.  The song was called Miles and Miles. 

We saw Moses the camel.  Moses was sniffing my chair. 

We saw trains in Index.  The trains were carrying airplanes.  We went to the Iron Goat Trail.

I like to do the new dinosaur puzzle.

Love, Lucas

The back-story to most of this is our trip to the Point Defiance Zoo and Aquarium yesterday, and then our trip to Index, Washington over the weekend.  Index is a tiny town in the North Cascades, just about an hour north east of Seattle.  Our neighbors have a cabin they’ve lent us before, right on the Skykomish river, so we took Lucas out for a weekend trip.  Index is the smallest town in western Washington with about 160 residents, plus the visitors that come to kayak and rock climb in the summer.  There are active train tracks that run through the middle of town, and right by the cabin, so Lucas got to see giant freight trains up close.

We happened to be there for the annual Index Arts Festival, which meant a warm outdoor summer day with 20 or 30 arts vendors set up in tents around the central town park.  There was a stage where local and traveling musicians (we heard blue grass/old-timey musicians who had come all the way from Bellingham) played for audiences that never got bigger than 50 people.

Lucas’s first goal at the festival was to meet dogs, and there were plenty.  We’re used to approaching strangers and asking if Lucas can meet their dogs – we do it all the time, and people are almost always friendly.  But in Index something felt different.  People were not just polite and patient, but it felt like many people were genuinely really excited to meet Lucas.  There was a vendor who did watercolors of animals who loved meeting Lucas and seemed deeply moved that he liked her goose painting.  There was a family visiting Index who came over quickly to meet Lucas and then offered useful suggestions about accessible hikes (ie the Iron Goat Trail).  There were at least three other wheelchair users at the festival, which felt like an unusually high ratio of chair users for such a small town and gathering.  An older woman in a scooter chair was excited to introduce Lucas to the dog that rode around in her lap, and she was impressed to hear Lucas’s voice.  Another family showed Lucas their two big dogs, including a big whining husky, and they all beamed at Lucas as he admired their dogs.

And there were other people, after the festival, who seemed so happy to have Lucas in town.  An older guy with rolled up flannel sleeves leaning out the window of a beat up pickup truck who pulled over to ask “how old is she?” as a way of meeting Lucas, and he told us about his grandnephew.  A younger guy rolling through town on his bike drinking a beer gave Lucas a giant thumbs up.  We spent the drive home trying to decide what it was that made Index so welcoming.  A higher than average number of people with disabilities?  Small town culture?  Working class culture?  Or just a beautiful summer day with nowhere to be and nothing to do except hang out in a park with a few friends and strangers?

Its hard to say how all this registers for Lucas.  He still doesn’t say anything about his differences, or about how people interact with him.  But that of course doesn’t mean it’s not all registering.  He was in a great mood all weekend long, maybe even a little more willing than usual to explore and try new things.  Maybe it was the attitude of strangers that helped him, or maybe he just felt how happy it made his parents to feel so welcomed.

Yesterday Lucas lost his first tooth! Krista was helping him brush in the morning and all of a sudden it wasn’t there any more.  It took a while to find it in the back of his mouth, but once we did, tales of the tooth fairy commenced.

As it happens, we’re up at Whidbey Island staying the week with Burke’s parents, and Lucas’s three cousins are also here. They were very excited to be part of this historic event, and helped build the suspense around the famous tooth fairy. Then Auntie Ash made a special-Lucas-tooth-pillow, which we put the tooth in before falling asleep last night. This morning Lucas found in its place a bobble-head turtle and he’s been talking about it ever since.

We’re off for another island adventure today – and speaking of fairies, we’ll be taking another ferry across to the Olympic peninsula to spend the day in Port Townsend. Summer rules.

If Lucas was able to write this blog himself, this is what he would tell you about our past ten days: Lots Of Animals.  Creatures.  Mountain creatures. Sea creatures.  House pets, farm animals, petting zoos.  Animals you see from the ferry, little ones you hold in your hand.  He can list every dog we’ve met by name.  Needless to say, it’s been a full ten days.

Last weekend we took an extended weekend to go back to the Leavenworth mountains with our friends Eli, Lili, Estevan, Elisha, and kids.  We had been talking up the adventure with Lucas for a week, listing each of the people we would see.  And then the day before we left Lucas realized he remembered the place we were going, and he lit up.  He suddenly added Shirley, Kaya, and Brooksy (the resident dogs) to the list, and he was thrilled.

It turned out to be the most beautiful spring weekend in the mountains, and we even got to lie outside on the deck and soak in the sun.  While the other families were off hiking, we called Shirley over and she and Lucas had an hour-long love fest.  Shirley is a very, very sweet golden retriever, who wants endless attention.  Whenever Lucas (or Krista) stopped petting her, she would gently put her paw on Lucas’s chest to ask for more.  Lucas would light up and say “Shirley gave you paw!”

Lucas also carried his “container” around all weekend looking for bugs — ants, beetles, anything that he could watch crawl around a very small space with a magnifying glass on top.  And then there were three miniature donkeys that Lucas got to feed.  Another thrill.

We went on to the town of Leavenworth and stayed two more nights on our own, soaking in the sun and mountains and rivers.  The highlight for the two of us was finding accessible hiking walking trails along the Wenatchee River.  Lucas’s highlight was definitely the petting zoo.  He got to feed a llama, a goat, and a pig named Penelope Pickles.  And he loved the turkey’s sound.  We also got to lie out in the grass at the foot of the mountains and watch the birds feel spring.  Lucas is good at bird identification, and in an hour or so we saw flickers, hawks, finches, sparrows, and robins.

We came home for a couple days of school, then headed back out to Whidbey Island with Burke’s family for another weekend adventure.  Lucas was lucky to have his cousins there to help catch and motivate him to play with the tiny crabs in the tidal pools.  We also lay on the beach and watched bald eagles, great blue herons, and sea gulls.  (Have we mentioned the sun has been out?)

And then, almost to test whether or not seeing animals could ever get old for Lucas, we we visited Elisha’s family’s small farm on Whidbey.  Here we weren’t even constrained by fences.  Elisha’s mom led Lucas and his cousins in to the pasture, where they were promptly rushed by a dozen or more friendly farm animals.  The pictures speak for themselves.

And then, as if the animal kingdom was rewarding us for our love, the captain of our home-bound ferry announced an orca sighting to the south.  We rushed over and got to see a small pod of orca fins gliding up and back down into the water.  It is possible that Krista was even more excited than Lucas.

This is of course an incomplete picture of the vacation – the two of us enjoyed the people we were with even more than the animals.  We felt lucky in so many ways.  And we also came home worn out from some sleep deprived nights and from all the work it takes to get Lucas out.  But we’ll write more about that later.  For now, we thought we’d stick with Lucas’s highlights.  Which in list form makes for a pretty impressive vacation:

Shirley, Brooksy, Kaya;

miniature donkeys;

llama, goats, miniature cows, pig, peacock, duck, turkey, chicken rooster, and donkeys;

gold finches, house finches, hawks, robins, sparrows;

crabs, eels, starfish;

bald eagles, great blue herons, red winged blackbirds, Canadian geese;

Bruno (Nonna’s dog) and Zoe (Nonna’s cat);

more miniature donkeys!;

goats, sheep, miniature horses, bunnies, chickens, geese; sea gulls;

and orca whales.

This vacation update is late in coming because we just had an amazing visit from friends here in Seattle, essentially extending our vacation.  More on that visit (and Seattle snow!) soon.  But here’s a bit more on LA…

It’s hard to know how to describe anything in our lives with Lucas – sometimes language doesn’t totally fit our experience.  So both of these statements about our Los Angeles trip are true: the rest of our time in LA felt like a perfect, wonderful, “real” family vacation.  And, our trip was hard.  We were really tired by the end, and because of our limited mobility couldn’t do everything we would have liked.  But maybe that part – feeling tired and limited – is just part of what “family vacation” is all about?

The exhausting part had to do with the fact that Lucas isn’t sleeping well.  The morning we departed for LA Lucas was up and ready to go before 4 am, and of course we were along for the ride.  Other nights during the trip he’d wake up many times in the night, needing attention each time.  During the euphoria of travel (and exposure to sunshine!) the lack of sleep didn’t  effect us too much, but by the end at least one of us (the Momma dinosaur) was exhausted.  Besides sleep deprivation, there’s also a lot of effort, time, and energy that goes into setting Lucas’s gear up in a new place, moving pieces around to approximate our home set-up with ventilator, humidifier, pulse-oximeter and other critical pieces of machinery, meds, etc.

But all of that was to be expected, so the more exciting part is that we had a wonderful time.  Not just despite all of the challenges, but maybe also because of them.  The hard parts can make the many sweet moments feel so hugely triumphant.  We often savor small things — making it to a new museum, simply getting our kid down the beach to see the waves — with such joy, and with a present-moment gratitude we wouldn’t have had without disability.   So the joy of everything that vacation means felt luxurious: exploring a new place, tasting and touching and feeling new environments, relaxing into having more time to be with each other, catching up with friends.  A few highlights of the second half of our trip included:

– Watching the Superbowl and having a leisurely dinner with friends/ hosts Walker and Devon.  Lucas spent most of the 3+ hours of the game snuggling with Mies the chihuahua, but each time Burke yelled excitedly at the game Lucas would demand to know “What did the Hawks do?”  He learned new football vocabulary including the words “safety,” “interception,” and “Bronco Busters.”

– A trip to the giant LA Natural History Museum.  To our surprise, Lucas was initially extremely intimidated by the T-Rex and Triceratops fossils in the foyer.  It seems that books didn’t prepare him for the life-sized dinosaurs.  He insisted on going home, so we switched gears and checked out more fuzzy mammal-focused exhibits for a while.  Then we found the back door entry into the dinosaur exhibit, promised the that stegosaurus was friendly, and he agreed to go in.  A volunteer approached him and offered him some fossilized dinosaur poop to touch.  It could have gone either way, but he decided to be brave and go for it.  And once he touched the poop, there was no turning back.  We spent another hour checking out huge fossils.

– A visit with Franny and Ilana, good friends from DC who came out to Venice to hang out since we couldn’t make it to their place on the other side of the city.  Although Lucas hasn’t seen them in a long time — and probably can’t remember them from 2 years back — he treated them both like old friends, catching them up on his LA adventures.

– A trip to the Santa Monica pier and time to fly the kite (“just like the Cat in the Hat”), followed by a wind so strong that Lucas asked to go inside a restaurant.  Which obligated us to get a drink and watch the sunset over the ocean.

– On our last morning, we ventured to a public beach a few miles north where we had heard there were special beach wheelchairs for the borrowing.  We had to drive for a while to find the lifeguard station, but thanks to an amazing online accessible-beaches-of-southern-california guide, we had we had what we needed.  Eventually we found a lifeguard who lent us a wheelchair designed to move through sand.  If you’ve never imagined pushing a regular wheelchair through dry sand, try imagining riding a bicycle on a California beach.  Impossible.  But with gigantic tires, dry sand is navagable.  And the adventure was awesome!  It was a bit like the time we took Lucas sledding — he was having a good time, but it’s possible that the triumph of getting him there felt even more thrilling to the two of us.  He definitely enjoyed it too, especially the sandpiper spotting (hence the song at the end of the video).

We ended the trip in general awe of the generosity of friends and the MTM community.  We left the bungalow (where Lucas was ready to move permanently) and drove our wonderfully accessible van to the airport, where we parked it a few hundred feet from our check-in gate.  We hid the key and left it for Nancy and Donald to come pick up.  We couldn’t have dreamed up more perfect logistics, or a better vacation.

We’re in L.A.!  Venice Beach, to be specific.  And after the first three days of vacation, we’re feeling extremely lucky.  And relaxed (mixed with a pretty splash or two of exhaustion).  But the rewards of being somewhere new, a little bit warm, and with old friends makes it so, so worth it.

We flew out of Seattle on Friday morning after weeks of organizing all the logistics involved in traveling, plus traveling with vent.  And it all paid off.  We made it with relatively few glitches and arrived and the bungalow that our friends Walker and Devon had made available – Devon rents the place on AirB&B and its just one block from the beach!  The highlight of our first few hours (for Lucas at least) was hanging out with Lotus Flower and Mies, two chihuahuas who were very gentle and funny with Lucas.

Later that evening we had a wonderful dinner with Nancy and Donald who are part of the myotubular myopathy community.  They live in Huntington Beach and are letting us borrow their wheelchair accessible van for the week which is extremely generous.

On Monday we met up with our friends Ken and Patri and their kids Mateo and Sofia.  We knew Ken and Patri before we all had kids and lived in Brooklyn back in the mid-2000s.  Its been a long time since we’ve hung out so it was great to catch up.  Our destination was the La Brea Tar Pits and the Page museum where Lucas was able to see saber tooth tigers and woolly mammoths… he’s pretty sure he saw the fossils of an Indricotherium too, so don’t tell him that it was actually an ice age camel!  The giant puppet saber tooth was a little too much for Lucas and we had some tears… but the rest of the visit was fun.

In the afternoon we took our second big walk on boardwalk of Venice Beach.  Lucas was loving all the funky characters, and our friend Ilana was along for the journey and showed him the skate park where some amazing skateboarders were tearing it up.  We would have stayed out longer but a winder storm blew in and the sand got overwhelming.  Luckily, there was enough time to hit the infamous “muscle beach” and scope out the old-school roller skate dancers before heading back home.

Today we’re getting ready for the Superbowl and Lucas promises to say “Go Hawks!” many times.  We’re also watching the presidential elections in El Salvador closely and hoping for a big victory for the leftist FMLN party!

(Pictures enlarge if you click on any one of them, then you can scroll through them in larger format.)

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!

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.

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: