Lucas Camilo

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Fall is in full swing and lots it’s going on in our world that we haven’t had time to write about.  We bought a house, for example.  It’s a block away from where we currently live and has a great single floor layout for a kid in a wheelchair (and a basement that we’re hoping to rent to a friend eventually) – so that’s exciting!  Lucas calls it “the house with the birds on the walls” or “the house where we speak with a British accent.”  The former is probably self-explanatory; the latter stems from the fact that our real estate agent is British and Lucas REALLY likes speaking with a British accent these days, so having an authentic Brit to do it with made the house quite memorable.

In other good news, Lucas has continued to do well in kindergarten, going from a half day to when he first returned to 2/3 of a day now.  His leg is all but healed but he still has a removable splint on it, and we’re going to wait until we get the go-ahead from the orthopedic specialist (hopefully next week) to remove the splint entirely before trying a full day at school.  The other challenge is that the school still has not provided Lucas with a one-to-one aide, something which is required under his Individualized Education Program, or IEP.  Lucas is accompanied to school by his nurse but she can’t be on top of his health needs (which includes feeding him through the g-tube, changing, etc) and also work with him on academic matters.  At least there is someone coming into the class occasionally to give her bathroom breaks!  Krista put some pressure on the school last week and finally they are moving ahead on hiring a permanent aide for Lucas.  We’ll report more on his life at school when we have more time; for now, its fair to say that despite some challenges, it’s encouraging to see enjoying it and building up stamina for the longer days.

This weekend Krista is at a yoga training and so Burke and Lucas are getting out for some fun activities. He’s currently taking a long nap (something he doesn’t do as much during the week these days since school takes him right through his old nap time.)  Earlier today we made it to Lucas’s cousin’s soccer game and we’re happy to report they trounced their opponent – maintaining good sportsmanship, of course.   Here are a couple shots from the game:

First off, we want to thank everyone for the outpouring of support following Lucas’s broken leg.  From the blog and Facebook comments to the physical cards that have been coming in the last 4 days, Lucas has been really enjoying all the attention. After his latest batch of correspondence arrived today Lucas announced that he had received “a zillion of cards!”

It’s especially important since having a broken leg is no fun.  Lucas probably won’t get out of the house much over the next few weeks… in fact, it’s looking like he’ll be mostly hanging out of the couch. For a kid who loves lying on the couch reading books and who is not that mobile anyway, its not the worst thing in the world.  But after less than a week, there’s a bit cabin fever (for all of us) setting in.

So what’s happened since we last posted? Lucas rested up on Labor Day and welcomed the arrival of our friends from DC, Alexis and Mackenzie.  The pain from his broken femur seemed to be decreasing, and having more company around definitely made recovery a little easier. By Wednesday morning we decided that Lucas was feeling well enough to make it to his first day of kindergarten!

Getting up in the wheelchair was a challenge that involved some tears, but Lucas was in pretty good spirits once he was up.  We decided that he’d only go for a couple hours since constant transfers to and from the wheelchair just weren’t going to be possible.  It was important to be there on the first day — Lucas could see the other kids in his class, and they could see him and hopefully remember that he’s part of their class in his absence. But for us it was a little anti-climactic because of the shortened day and the reality that Lucas’s first year of elementary school wasn’t going to kick off the way we had imagined.

On Thursday, Burke took Lucas into Children’s for some more x-rays of the leg (click on the picture to enlarge and see the area of the break).  It was a brutal journey, with lots of grimaces and tears every time Lucas got moved around.  The docs concluded that the splint had been placed a little low and therefore wasn’t giving his broken femur the stability it needed.  So they started to add to the splint and in the process began to wrap up Lucas’s midsection, diaper and all.  There was an awkward pause when Burke asked how we were going to change that diaper and subsequent ones; then they unwrapped him and pondered the situation for a while longer before coming up with a plan B.

The newly extended splint required quick adjustments to the wheelchair to fit Lucas in, and the whole experience made us realize that the best way to expedite recovery (and avoid the painful tears of anticipation) would be to avoid getting up in the chair for a while.  That afternoon we sent a note to Lucas’s teacher saying he would likely miss the first few weeks of school.

Once the decision was made, we hunkered down in the house with support from Lucas’s nurses, constant attention from our out-of-town guests, visits from Burke’s parents (not to mention a whirlwind stop through by Lucas’s cousins) and lots of books, stickers, cards and games.

Lucas doesn’t seem to be feeling much pain but he’s still having his ups and downs — at times he’s like his usual self, goofing around and acting as if nothing is wrong.  Then suddenly he seems frustrated and ansty, and its hard to figure out how to help him feel better.  We recognize that we’re in for a long ride in the coming weeks (months?) and we really appreciate all the support and encouragement from our friends and family.

Reading a card from the full staff at the Social Justice Fund NW, including a T-Rex drawn by Sunny who says “Lucas is RAWRsome!”

With Alexis and Mackenzie, enjoying new finger-puppet dinosaurs

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We use this blog for a lot of things: health status updates, reflections on parenting, bragging about Lucas, sharing what we’re learning about disability… But sometimes we just need to write down everything that’s happened so it doesn’t get lost.  So the themes of this post are (a) look how much we can do, and (b) look how much we can do despite, and sometimes because of, disability!

August is the month to visit us in Seattle.  Our dear, dear friend Sha Grogan-Brown (aka Tio Sha) came to town mid-August, just in time for a hair cut.  Lucas doesn’t usually share his silliest side with anyone except close family, but for Sha he made an exception.  It started the first night Sha was here, when we got out the scissors.  Lucas was a pretty good sport about the haircut, but since Sha had a large wheelchair headrest to contend with, the haircut took a little while.  So Sha started talking up the cutting sounds — “snippy snip” and “trimmy trim.”  Lucas happens to love silly words, and he lit up.  Pretty soon he was embellishing.  “Snippy snip snip snip… trimmy trim trim!”  When he takes any silly word game up a notch he beams with pride.  But each time Sha met him with more silliness, and Lucas would crack up with his huge silent belly laugh.  The snippy snips turned into a whole language that lasted throughout Sha’s visit.

Sha timed his trip to be here for Lucas’s birthday, and it was awesome to have him here as uncle/friend/party-helper since this was our first attempt at a real kids birthday party.  We rented the very accessible and spacious community center near our house and invited kids from school, from music class, from the neighborhood, from our anti-racist parents group, and from our wider circle of disability families, as well as our family.  We were nervous about the party — Lucas often doesn’t love a crowd, plus many of the people coming wouldn’t know anyone else at the party.  But it was a magical success.

The two key ingredients were bunnies and Ben, our musician friend.  Someone in Seattle came up with the brilliant plan of renting out her bunnies for kids birthday parties, and they were as magic as it sounds.  For a while the party consisted of the mayhem you would expect of a 5-year-old’s birthday party: children running (or wheeling) around everywhere with balloons, markers, and smeared cream cheese.  And then the bunny lady arrived.  She said nothing, just pulled out a blanket and opened up her large tub of bunnies.  Suddenly all the attention shifted to her corner of the room.  Kids quietly sat down on the blanket, and she handed them swaddled bunnies with carrots and cilantro.   I had talked to her beforehand to be sure it wasn’t a requirement that kids sit on the floor, and she was ready to hand bunnies off to the kids who stayed in wheelchairs.  It was mesmerizing.

Lucas loved it.  He held 3 week old baby bunnies, lop bunnies, and a mystery bunny named Señor Wobbly who traveled in a basket because he seemed to have low muscle tone, too.  Lucas’s friend Chris convinced the bunny lady that his lap was safe, so she set the bunny down and he peeled out in his powerchair to deliver a bunny to another kid on the other side of the room.

Near the end of the party our friend Ben generously agreed to play a few songs.  He had learned “Here Comes the Sun” that week (Lucas’s favorite Beattles song), and Lucas sang right along.  He also played some Bob Marley and Violent Femmes songs that were new to Lucas, but he loved those too.  In fact, in the days after the party, Lucas talked more about Ben’s music than even the bunnies (this is a kid who 95% of the time shows more interest in animals than humans.)

And two hours after it started, it was over.  And family and friends helped us undo the mess, and Lucas went home to revel in the excitement.  We both felt so glad to have so many people we’ve gotten to know in the last 2 years come out to celebrate Lucas.  And so relieved that Lucas liked it, too.

More photos from the party are below, along with a video of Lucas and his buddy Chris in their wheelchairs, holding hands and watching the music:

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.

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.)

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.

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.)

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: