Lucas Camilo

Lucas says "I'm going to miss you!"

It’s exactly 2 weeks until we get on a plane from Washington DC to Seattle.  Things are falling into place in terms of plan-Lucas: we finally convinced the medical supply company to allow us to travel with his ventilator (whew!), have signed up with a new home nursing company in Seattle with a good chance that it will be covered by private insurance, and have set up a number of appointments for Lucas soon after our arrival.

All of a sudden last night we realized that we have very little time left for our life in Washington DC.  As we get the details of our travel and Seattle preparations worked out it’s hard to know how to spend that time.  Some days it feels like we’re just going about our regular routine… on others, there’s a desire to do everything and see everyone before the big day arrives.  We are heartened that our closest friends have organized a farewell party the weekend before we go so that we’ll have a chance to spend time with many good friends.

We moved to Washington DC in the summer of 2007, so in reality we haven’t even lived here 5 years.  And yet it feels much longer.  We have both been able to do a lot of meaningful work and through it we’ve connected with many wonderful people during our time here.  The 2 ½ years since Lucas’s birth feel especially significant because they mark our entry into parenthood.  Of course we had no idea what we were getting into back in 2009, and the journey we began when Lucas was born wouldn’t have been possible were it not for the amazing advice, support, and accompaniment of so many people.  Today we want to give a little tribute to some of those people – the professionals in Lucas’s life who we’ve come to depend on, and who have come to feel like part of our large, extended DC family.

As we have mentioned before on this blog, we came into being parents with a healthy skepticism about western medicine, planning on keeping our child away from the institution of healthcare as much as possible (starting with a planned home birth).  That didn’t quite work out, and as Lucas was spending his first 3 months of life in the hospital we came to realize we were going to need to rely on many different doctors and specialists… so we might as well find some good ones.  And we did.  Lucas had a fantastic neonatologist, Dr. Stone; a generous and very caring complex care doctor, Dr. Fratantoni; two big hearted neurologists, Dr. Leshner and Dr. Tesi-Rosha; an all round fantastic pulmonologist, Dr. Koumbourlis; and a great ENT doctor, Dr. Preciado.  Along the way all of these doctors made important contributions to our having better understanding of Lucas and his disease, and at times went beyond that, showing care and love for our son.  At a recent visit with Dr. Koumbourlis, for example, he suddenly stopped in the middle of our conversation, looked over at Lucas – who was discussing penguins with himself – and said with admiration, “I just realized that he has become a little boy!”  Indeed.

Lucas’s therapists have made a huge contribution to his progress in life as they have had even more opportunity to work with him over the past few years.  From his NICU therapist Cathy to his first in-home therapists Dan and Mindy, Lucas has benefited from the thoughtful experience of various physical, occupational, and speech & language therapists.  Recently Evan, Lucas’s second in-home PT, returned for a visit and was totally blown away by how far Lucas had come.  We are especially indebted to our current batch of wonderful therapists: Debbie and Erika, the ideal OT-speech team who have helped Lucas develop his communication skills in ways that some people never thought possible; and Erin, the most positive and determined physical therapist a little guy could have.

And then there are the nurses.  During Lucas’s difficult three-month stay in the NICU it was the support and knowledge of certain nurses that helped keep us sane.  We’ve been out of touch with a lot of them but we will never forget their care for Lucas during a crucial time.  Amy and Erica, his nurses at the Washington Hospital Center on the day he was born and for the first week of his life; many more at the Children’s NICU including Kelly, Charm, and Ann; and those that cared for Lucas during his visit to the PICU in early 2009 (and who kept us company as we slept on chairs in his room night after night during the biggest snowstorm in a decade).

But perhaps the biggest thanks go to Lucas’s favorite two home nurses, Victor and Florence.  We have struggled over the years with the home care company, and early on some of the nurses they sent were astonishingly ill prepared to take care of Lucas.  But in the end they gave us Victor and Florence, and for nearly two years they have been the people that Lucas has happily spent the most time with, apart from his parents.  In a practical sense they have allowed us both to be outside of the house at the same time, if only occasionally, while on certain nights giving us the piece of mind to sleep without blaring alarms waking us up.  But they’ve been so much more than that.  Victor has got Lucas’s morning routine down pat, providing him with the medical necessities 3-4 days a week (nebulizer, suction, food & medications, etc.) but also the things that make him happy (a “hot banana” to chew on, the right book at the right time, his penguins).  Florence has been more like a teacher than a nurse, working with Lucas on identifying colors, letters, numbers, and animals, as well as practicing sign language (having learned many words and phrases herself over the past year) and reading book after book.  To see Lucas’s face light up when she comes in – as he flashes a big “F” for Florence sign with his left hand – is to understand how important she’s been to him.

We’d love to say that this really isn’t goodbye for Lucas but the fact is that given his disease and very limited ability to fly he’s probably not coming back to DC anytime soon (though Florence and Victor have both promised trips to Seattle, and all others are welcome).  That feels very hard, but we also know that Lucas will build a whole new team in Seattle, while the contributions and love of those who have been part of Lucas’s care for the first part of his life will never be forgotten.

For New Years Eve our generous neighbors (two houses down) let us borrow their living room and make a fire.  We also made a fabulous dinner and invited three friends to join us and Burke’s parents for a New Year’s feast.  But if you ask Lucas it was the fire that was the real highlight.  He’d never seen one before and as soon as it starting roaring and we taught him how to say “fire” the joy commenced.  For a good 45 minutes he pointed at the fireplace and said “fii-yer, fii-yer!” over and over again, occasionally adding “hottt, orrr-ange fii-yer!”

The rest of the night was pretty good as well and Lucas eventually got to settle into Nona’s arms in front of the fire and listen to stories before starting to fall asleep.  In the end he decided he wasn’t tired enough and managed to stay up nearly until midnight.  Alas, we all fell asleep before January 1 had commenced, but it was nice evening nonetheless.

We want to thank everyone who made 2011 such a special year for Lucas.  It’s hard to know where to begin a list of highlights but certainly Lucas’s progress with communication would be close to the top.   A year ago he was just starting to waive goodbye or lift his arm up to do a high-five; he had no really verbal communication other than saying “nananana” over and over.  As we write this, Lucas is demanding to play the memory game with animal cards, then naming each color of marker he wants to draw with, then narrating as takes the caps “on” and “off” and “on” and “off” again.  A year ago we couldn’t have imagined him having the strength, coordination, or dexterity to even put a cap on a marker, much less tell us about the action as he did it.

In 2011 we were extremely fortunate to be able to spend time with friends near and far.  We took our first family road trip, traveling to Brooklyn and then Boston with Lucas to introduce him to many friends, old and new.  And at the end of the summer we took our first “vacation” with friends, spending two wonderful days and nights in a cozy cabin in the woods.  And in 2011 the two of us were also able to travel on separate trips to visit family and friends and stay engaged in national organizing work, and we remain grateful to nurses Florence and Victor for making those individual trips possible (meaning the parent who stayed home got some respite from 24/7 Lucas care).

If Lucas made this list, 2011 would be the year of loves and fascinations.  Ducks.  The phone.  And then the computer.  Cute puppy videos on youtube.  The color yellow.  Sharks.  Lights.  Eggs.  Animal cards.  Chewing on “hot” bananas.

Some of our highlights in 2011 include things that didn’t happen.  We didn’t move to the northwest, and the upshot was that we’ve been able to stay longer with the friends and work we love in DC, not to mention all the people that make up Lucas’s support team.  Lucas was not hospitalized once in 2011 — in fact, it’s been almost two years — which is a really big deal for a kid who is technically labelled “medically fragile.”  The families of many kids with MTM who are spending time in the hospital this winter are in our hearts, and we feel extremely blessed to be in our home with a relatively healthy kid whose biggest complaint is that we don’t play the birdy song often enough.

If there’s one thing Lucas has taught us in 2011, it is that the future will unfold in unforeseen and beautiful ways.  We wish you a 2012 filled with justice, community, love, contentment, and the magical joy of joining children in play and discovery.

Yesterday we spent nearly three hours at the “Occupy DC” protest encampment in downtown Washington DC.  When Lucas first visited Occupy DC, which has been stationed at McPherson Square on K St. since early October, it was still relatively small and very unorganized.  In the last few weeks it has grown to the point that 3/4 of the square is filled with tents, including an information headquarters, food tent, and medical station (using a giant yellow tarp that we donated!)  But what is most exciting, at least yesterday, was the generally festive and hopeful mood of the space – even as complicated and challenging discussions around class, race, tactics, etc are taking place all around.

Lucas was little overwhelmed when we first rolled in.  He didn’t cry but instead slipped into his spaced-out-mode, which is sometime how he reacts to new situations with a lot of people.  People who haven’t met him before assume that he’s tired or non-communicative, and we sometimes overcompensate by encouraging him to respond in sign language.  Yesterday, however, we let him absorb the scene in his own way, and were happy to be approached by our friend Catherine and her daughter Ranvita, as well as another mom and daughter who welcomed us to the space and started a conversation about making Occupy DC more kid and family friendly.  Krista had the idea of doing a “Occupy Halloween” gathering next weekend – complete with trick-or-treating at the tents – which got everyone really excited.  So stay tuned for that!

friends with kids at Occupy DC (Lucas is holding down the Caucus in the background)

We briefly checked out a drum circle, but Lucas was ready to lay down in the grass and commence the “Wheels on the Bus” caucus so we found a nice spot in the sun between a couple of ongoing teach-ins.  More friends with kids arrived, including Rami, Crystal, Hallah and Nadeem, as well as Sha and Matt who were taking care of Rosemary.  Lucas was in a much better mood as the gang sang “Wheels on the Bus” repeatedly, and shared page-turning duties on his current favorite book.  Meanwhile, Burke jumped in and out of a dynamic discussion about how the struggle for immigrant rights relates to the Occupy movement (part of a teach-in organized by DC CISPES).  And more and more friends dropped in on the kids caucus, some of whom had never had the pleasure of meeting Lucas.

For us, it was great to be part of political action in a way that felt truly safe and inclusive for Lucas.  We had previously lamented that Lucas’s disability and medically fragile condition make it hard for us to participate in protests as a family (and if you didn’t know, we love a good protest!)  But as it turns out, Occupy DC is the perfect action for us to join… heck, with a gas generator  now up and running we could even bring our own tent down and spend the night, with proper hook-ups for Lucas’s equipment.  Ok, maybe we’ll hold off on that, but we sure are looking forward to “Occupy Halloween.”

(Krista writing)  I spent last weekend in a hotel outside Minneapolis for the second ever MTM-CNM Family Conference (that’s myotubular myopathy, the disease that Lucas has, and centronuclear myopathy, a slightly larger umbrella of genetic neuromuscular diseases).  It was amazing to meet so many people who have lived through what we’ve been through.  I was nervous about going – what will I talk about with all these strangers?!? – but it turns out having MTM in common is enough to keep conversation going for hours.   There were about 50 people in attendance including researchers, kids, adults, parents, aunts, uncles, grandparents, and friends.

One real highlight was the talent show on Saturday night.  There were kids in wheelchairs and walking in a parade of homemade hats; a whole family performing a rock ballad with pasted-on-mustaches; a 10 year old who lost his brother to CNM performing magic tricks; and a full standup comedy routine with vent and wheelchair jokes.  Jacob, a 22-year old who uses a trach and vent, showed off his pick-up lines for the ladies.  He called one of the moms up to stage and asked her to disconnect his ventilator tubing.  She hesitated, he insisted, and so she did.  He smiled and leaned into the mic. “You take my breath my away.”

And it was good to laugh, especially with families of older kids who have walked this path longer than us, and even with families who have lost their kids.  It’s good to know that even as some things get harder – like picking boys up and dancing around the room – families are still finding all the joy that we have while living with Lucas’s MTM.

A lot of the official portion of the conference was dedicated to discussing research.  There were researchers from the three main labs in the U.S. talking about where things are at and how close we are to having drugs to trial.  Dr. Alan Beggs and Elizabeth were there from Boston and presented a lot of what they had told us when we visited them last month.  Dr. Jim Dowling was there from the University of Michigan, where they’re working to pull together a mass census (or “natural history study”) of MTM and CNM, looking at how the diseases presents in as many kids as they can find, and then following them over five years to see how it progresses.   There are still many, many things doctors don’t know about symptoms Lucas has that may or may not be associated with MTM, so having this survey compiled and published will be very helpful.

The other exciting news from the UM lab is that they’re testing a drug called mestinon on zebra fish with MTM.  Mestinon is already on the market, prescribed to people with another form of muscle disease.  The drug is clearly having an impact on the MTM fish, so they’re hoping to get approval soon for an FDA trial of mestinon in MTM kids.  There are at least a couple kids with MTM who have already been taking it, and while it hasn’t gotten them up out of their chairs, their families think it may be helping them.

The biggest news was from Dr. Childers who is working with dogs who have MTM at Wake Forest.  They’ve recently tested gene therapy on the dogs by injecting a virus carrying myotubularin (a good version of the defective or missing protein) into the dogs’ hind legs, and so far the results have been amazing.  They’ve compared one hind leg with the injection to the other without, and then compared them to the dogs that don’t have MTM.  The graphs showing the change in muscle strength took my breath away – the legs that got the injection were nearly at the same level as healthy dogs.  The research is just getting started, so they’ll probably have to repeat the results many more times over the course of the next 2 years and show the dogs don’t have an immune response, but these initial results are really exciting.

(As a side note, I have to say that I have really complicated feelings about animal testing.  But I am thrilled that the research is moving forward and grateful to all the animals who are contributing to what may be a treatment or cure for MTM and CNM one day.)

Besides the formal presentations, there was tons of just talking about our kids.  I learned that being picky and at the same time extremely good-natured is a common trait of kids with MTM.  Javad, a wonderful nine year-old from Oregon, used his speech device to demand that his mom make everyone stop clapping at the welcome dinner.  (She didn’t.)  We hung out afterward, and Javad held my hand for a long time while we played and talked.  His soft, gentle grip felt just like Lucas’s – except bigger – and I felt extremely happy and lucky.  Javad studied every picture I showed him of Lucas, flipping through the album of Lucas pictures twice.

I asked for advice on various things and people were generous with their stories.  I learned that a lot of kids started using power wheelchairs at Lucas’s age, and people explained their chairs, vans and lifts.  Jacob, who’s used a power chair since he was little, warned me to watch my legs and get ready to start patching walls once we put Lucas in a power chair.  Over meals I talked with parents I’d just met about topics as varied as constipation (Lucas’s), family planning, vent settings, how to talk with kids about disability, suction machines, nursing, insurance, allergies, anesthesia, health reform, and even death.

The conference was organized by four moms, and it was an amazingly well-planned event.  Other highlights of the weekend included a whole “kids track,” with older siblings leading games and activities for younger kids all weekend long.  Organizers created a slide show, collected videos, and printed up a directory with family pictures and stories.  They had all the most important MTM/CNM researchers in the country at the event, and somehow they were all incredibly wonderful people who stuck around for the fun and bonding and grieving as much as the science. They picked a hotel that was really wheelchair and public transit accessible.  And they made sure the hotel had a lounge/bar space where we could all hang out at night.  By Saturday night – long after the talent show was over and the kids had gone to bed – we managed to get rowdy enough that people on the eighth floor of the hotel called down to the bar to complain.

Although it would have been great to be there with Burke and Lucas, I think Lucas would agree that we made a good decision not to take him – he would have been right there with Javad, giving a big “all done” sign to the clapping and non-stop chatting.  The next conference will probably be in two years, though there was talk of a west-coast gathering next year.  It’s hard to imagine, but if the stars align, we’ll probably be on that coast by then.  With Lucas in a power chair.

On the home front, Lucas and Burke had a good weekend in Washington DC – Krista was missed, but support from nurse Florence on Thursday and Friday allowed Burke to make it to work and meetings, and left the entire weekend for some quality time.  Nice weather in the mornings allowed them to lay out on the front lawn — swinging in the tree while battling mosquitoes — and some visits from friends gave Burke the occasional respite from non-stop book reading.  Lucas was in good spirits throughout the weekend and he (mostly) enjoyed the cranked up selections from Burke’s vinyl record collection (the harder-core punk rock sometimes got the “all done” sign.)  Whenever Krista called he would do the sign for “mommy” (thumb touching chin with fingers extended) and smile broadly.  He also learned to kiss his favorite new mini-stuffed ducky on the beak, which is pretty funny to watch.

Lucas made a lot of noise over the weekend too.  He isn’t always in the mood to verbalize but his voice is getting louder when he decides to pull it out.  He often tries to verbalize words for animals when he makes a particular sign.  He can now speak emphatically the words “hi,” “in,” “on,” and “aaat” (for cat).  He also tries to say dog, which comes out as “nooooan” while he pats his thigh to make the sign for dog.  It is ridiculously cute.

Thanks to everyone for the outpouring of love and support (this is Krista writing again) in response to the post about my dad.  I had an amazing trip to Jackpot, and it felt wonderful to travel with all your support — texts and emails and calls and letters and comments on the blog.  The place was stunning, with wide-open, huge-sky beauty.  I traveled there with my uncle Bill and aunt Becky, my cousins Garrett and Nolan, and family friends Rogelio and Gloria.  Rogelio worked closely with my dad for nearly 15 years, and he built a cross to put at the sight of the crash shortly after my dad died.  So part of the trip was about finally placing the cross (which is featured in my pictures from the trip).  Visiting the place of his crash brought me a sense of peace that I hadn’t expected.  The northern Nevada plateaus were so lovely that who knows, maybe we’ll take Lucas one day.

(Krista writing) Tomorrow I’m flying to Idaho, then driving to Jackpot, Nevada, to mark the 10 year anniversary of my dad’s death.  It’s strange for me to have so many people in my life who never got to know my dad – he’s such a big part of who I am today.  So I thought I’d write a little about him here.

Gary Craig Hanson was brilliant, warm, and incredibly hard working.  He taught me how to build a house (when I was five) and how to ride a horse (when I was ten) and how to save money and run a business (when I was still way too young to question capitalism).  Somewhere I still have a list he helped me to make with my short, medium, and long-term goals scrawled in pencil on a torn-out piece of notebook paper.  My dad was also deeply emotional, at times passionate and happy, at others angry or overwhelmed with despair.

My dad died on July 7, 2001 when he was flying his small plane to a “fly-in” with other pilots in Jackpot.  He’d had his license for about five years and had flown that plane dozens of times.  Weeks later, when we were going through his file cabinets, I found a folder with old pictures of airplanes.  There was a cover letter from TWA to Gary Hanson, saying they had enclosed the pictures of planes he had requested.  It was dated 1950 – he’d been dreaming about flying since he was five years old.

On the day of the fly-in, when he banked the plane to turn to land, the conditions were just wrong enough that the wing tipped and the plane spun out of control.  At the time I was living in Cholula, Mexico and had no phone or computer, so it took 24 hours for word to reach me.  My uncles drove to Nevada and brought his ashes home to Oregon.

It’s been a strange thing to become a parent without having my dad here to witness and support and love Lucas and me.  I know he would have absolutely loved Lucas, and I know it would have made him happy to see me grow into being a mom.  He used to tell me how much he loved learning from my sister and me, and we were still practically kids (20 and 24) when he died.   So I know if he were still here he would have been enthusiastic about learning everything Lucas has to teach.

I’m not exactly sure what I’ll get out of this trip, but I’m thankful to Burke for encouraging me to go.  I’m also glad my uncle, aunt, cousins, and family friends will be there with me.  I’m looking forward to knowing what the place looks like – to seeing the scenery he saw last.  I’m looking forward to telling stories and remembering him.  And I’m hoping to find a place in the desert to sit and begin to tell him everything I’ve learned in the last ten years.

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Prayer for My Father

May your beautiful, graceful spirit know how deeply you are loved.

May we carry on your legacy of courage and curiosity,
service and awe at the workings of the universe.

May we continue your work of learning
self-acceptance and forgiveness.

May we wake each morning with gratitude
for the tree or mountaintop or field or flower
we can see from our kitchen window.

May we find connection through humility,
admitting our weaknesses and
wearing our greasy work clothes in public,
even when it embarrasses our children.

May we have the courage to dream radical dreams,
to believe that we will one day fly,
and be fearlessly content regardless of the outcome.

May we know the tenderness of a listening parent
and the truth in stillness.

May we forgive ourselves, our families, our friends,
then strangers and enemies,
knowing they, too, dream secret dreams.

May we treat animals with kindness and respect
and a love that recognizes equality of all beings living on this planet.

And may our hearts find freedom
so we can fully behold the magnificence of this life.

Gary Craig Hanson, Sept. 10, 1945 - July 7, 2001

We’re writing with a major sense of accomplishment today having just returned from our first big family road trip — to Brooklyn, then Boston, then back to Washington DC.  We had a great time, and Lucas was especially a champ.   Most of the trip went better than we could have hoped for, though it was not without its rough spots.  For example, Krista has sworn off EVER driving into New York City again.  Ever.

much needed rest near our rented hybrid SUV

There were so many remarkable things about the trip.  First of all, Lucas has never sat up for more than a couple hours at a time before… and our drive from DC to Brooklyn took more than seven!  Though we took a couple short breaks along the way, this was still asking a lot of Lucas’s body.  He was exhausted by the time we arrived, and we were worried that he might be pooped for the next few days.  But as soon as we got him out of the car and into a bed, he perked up and was in good spirits.   And the same thing happened with our drive from NYC to Boston (which took five hours) and the return trip to DC (which we split up into two parts).  He read books, played with his singing turtle, read more books and requested that we sing songs.  As the trips wore on he got impatient and then physically drained, but that’s to be expected of anyone who spends so much time in a car.  So though it was tiring, it was exciting to discover that Lucas can travel far from home.

A major highlight of the Brooklyn trip was reconnecting with so many friends, some who had never met Lucas or hadn’t seen him in a long time.  Saturday was a beautiful summer day, and we spent 10 hours sitting out on Kevin and Liz’s porch as friends stopped through to hang out.  A special moment was Lucas’s meeting with our friends Manuel and Lisa and their two kids, Emelie and Antonio.  They brought Lucas a few of their favorite books and the two of them were patient and gentle as they read through the books with him.  It was incredibly sweet to see Lucas hanging out with kids we love so much, especially since he’s been nervous in the past.  We saw so many other friends throughout the day – Jacoby and Lezlie, Marsha and Ruby, Jesse and Alessandra (who were 9 months + 2 days pregnant!), Elspeth and Katrina, Phil, Tom and Chris – and we want to say thanks to all of you for making your way out to visit us!

(Lucas wouldn’t let us write about Brooklyn without mentioning the fact that we stayed at the “cat house.”  Kevin and Liz have four cats, and the minute we got into the house, Lucas spotted a cat and started frantically making the sign for “cat”.  He was very proud of himself, pointing and making the sign every time he saw one.  He also loved their ceiling fan, pointing it out and signing “fan” almost as much as “cat.”)

In Boston we spent more time connecting with new/old friends, and Lucas continued to do well.  We stayed with Jocelyn and Jason and their two kids, Arabella (2) and Jackson (4), who had been getting ready for Lucas’s arrival by practicing calm voices and gathering up duck books.  Their strategy worked – Lucas seemed very happy hanging out with them, and again it was great for us to seem him interacting with kids.  They even took us to a playground near their house where Lucas got to swing (with some help) on a playground swing.  He was tired from all the travel that morning but also totally fascinated watching Arabella swing right next to him.

Jason, Jocelyn, Jackson and Arabella were amazing hosts and we really appreciated having the kids spend time together and being able to have other friends drop by their house (like Christy and Oz, who stuck around for some quality book time with Lucas). It was also great to talk parenting and politics with Jocelyn and Jason after the kids went to bed.  Burke and Jocelyn met while living in El Salvador back in 2002 (though they haven’t seen each other since), and because Krista also lived their for more than a year we had many mutual friends to catch up on, stories to tell, and Salvadoran politics to dissect late into the night.

Our trek to Boston was partly vacation, but we also chose to go there in particular because we wanted to meet the researches who are studying myotubular myopathy.  So on Monday afternoon we went to the lab at Boston Children’s Hospital and met with its director, Dr. Alan Beggs.   Dr. Beggs and Elizabeth, a genetic counselor who works with him, made us feel very welcome, and they were clearly happy to meet Lucas.  We’ll write later about what we learned there – nothing astounding, but more details than we had known before.

Before heading back to DC we got to meet two families of kids with disabilities.   On Tuesday morning we met Will, a 10 year old with MTM, his mom Erin and their nurse Sue at the Boston Science Museum.  Will knew Lucas likes duck books so he brought Lucas “Make Way for Ducklings” (a Boston classic).  Will’s a huge Red Sox fan, and he used his computer to tell us about his recent adventures meeting some of the Sox’s players.  It was great to meet Will and Erin and begin to learn from their many more years of experience.  The night before we got to meet Jim and Cora, parents to a 3½ year old named Leo (who we didn’t get to meet this time around).  Leo has some similar and some different special needs as Lucas, and it feels like we have a lot in common with his parents just by nature of being young families navigating disability.  Dinner with Jim and Cora felt like meeting old friends – relieving to meet other people who know what we’re going through even before we start telling them about it.

Thanks to everyone who helped make the trip possible!  Here are a few more pictures:

Kevin reads a book while hangin’ in the cat house

Lezlie, Jacoby and Lucas get crazy with finger pupets

Have we mentioned that Lucas LOVES DUCKS? He says (signs) duck when he first wakes up in the morning, when he’s happiest throughout the day, and then later when he’s grumpy, and then again as he’s falling asleep at night. It’s tough to say what he loves more right now – ducks or books – since he usually signs the two together. Meaning, “get me a duck book.” He’ll even throw in a “please” and a “thank you” if he doesn’t see you moving quickly enough to get him a duck book.

Lucas’s fascination with ducks has been growing over the past few months. First he learned the sign and loved quacking his fingers together. Then he learned to identify ducks in his books, and pretty soon he was rapidly flipping past all the other animals until he got to the duck page of any animal book. When he lands on the page with downy, yellow ducks, he points, smiles, and quacks his hands proudly. He’s now able to “read” himself more pages in the animal books (signing cow, butterfly, sheep, cat, and mouse too), but he still pauses longest on the duck page.

So it occurred to us recently that he might like real ducks. Over Memorial Day weekend we went with our friend Alexis out to the Kenilworth Aquatic Gardens – a preserved wetland area with old lily and lotus gardens along the Anacostia River. It was great for Lucas because there was over a mile of accessible boardwalk that wound through the wetlands, but the closest we found to ducks were a family of geese. The growing goslings looked a lot like ducks to us, but either the sun was in Lucas’s eyes or he just wasn’t buying it.

So this weekend, with Nonna and Papa in town visiting, we decided it was time to see some real live ducks. On Saturday morning we packed Lucas up early  — it’s been humid and in the 90s for the last week — and beat the crowds to the bird exhibit at the zoo.  (For some strange reason the ducks are not a featured animal at the National Zoo and thus we had missed them the couple other times we’ve wandered around.)

This would be a great story if Lucas had gone crazy when we finally saw ducks. But in fact, his reaction to the ducks pretty much matched their reaction to us. About a dozen ducks floated peacefully around three small ponds in the shade. A couple stood on rocks on cleaned their feathers. A mommy duck led a pack of tiny babies through the pond. Lucas looked intently, and with our encouragement of ducks! ducks! ducks! and quack! quack! quack!, he eventually said “duck.” Unclear if it was because he was happy about the ducks in front of him — maybe totally awe struck — or just to get us to stop quacking at him.

We later found ducks hanging out with the flamingos, and they were fun to watch. But soon Lucas gave us the “go” sign, and he actually looked happiest when we were cruising around, stopping and going every 10 steps on his command. So the jury’s out on real ducks. But, of course, as soon as we got home he was ready for a duck book.

And Nonna and Papa have come up big for Lucas in the books category, too.  Since they arrived on Thursday he’s had them reading him books for hours on end. And he’s also gotten some good  sessions in the swing as well as endless singing of “Old MacDonald,” with Lucas requesting “duck” for every verse. (Thanks Nonna and Papa!)