Lucas Camilo

Today we went to the Seattle City Council to testify in favor of the Caring Across Generations resolution which we mentioned in our last post as part of a broader campaign to push for better wages and benefits for the growing industry of direct-care workers, while also seeking to strengthen support and programs for people with disabilities and the elderly.

Lucas took an early nap and since his nurse was out sick for the day we decided to bring him downtown for the hearing.  The three of us joined over a hundred people from various organizations who were there to wave flags and hold up thousands of postcards signed in favor of the resolution.  Lucas was in great spirits too – he got his own sticker and repeated over and over throughout the testimony “vote yes!”  He also brought along his Elmo sticker book in case they ran out of Vote Yes stickers.

Here’s what we said to the council:

We’re here today to talk about caregiving and our son Lucas.  He was born in 2009 with a rare neuromuscular disease called myotubular myopathy which causes him to have extremely low muscle tone.  He has a tracheostomy, uses a ventilator to help him breath, and receives all of his nutrition through a g-tube.  He’s also an amazing, funny and loving kid, but his medically fragile condition makes his life – and by extension our lives – very complicated.

Caregivers have played an important role in our lives over the last 2 ½ years.  Because of his complex needs and the risk of respiratory failure Lucas needs one of us or a vent-certified nurse to be with him at all times.  It’s hard to imagine not having home nursing and yet its been a struggle to get coverage for it– either through private insurance or support from the state – as well as other services that Lucas relies on.  Meanwhile, in our experience we have seen that the amazing nurses that help care for Lucas do not always receive health care benefits themselves, or a wage that properly values the work that they do.

We hope to someday live in a world where kids like Lucas get the services they need while at the same time the dedicated individuals who do the day-to-day caregiving for people with disabilities are valued and properly compensated.  The Caring Across Generations resolution is one step in the right direction, and we will continue to be part of the campaign for state and federal legislation that both ensures resources for long-term care and brings dignity to caregivers.  Thank you.

Congratulations to Washington CAN!, Caring Across Generations, SEIU, our friend Susie (the lead organizer on the campaign), and everyone else involved!

We’ve taken a while to write about our adventures in Seattle but we’re happy to report that things are going smoothly thus far.  In particular, it’s awesome to see Lucas taking the move so well.  Of course we know he’s a pretty easy-going kid, but he’s also very opinionated.  And he has a history of not liking a lot of things the first time he sees them.  So the fact that he’s taking this all in stride – a new house, new bed, new nurses, new doctors, new almost-everything – allows us to focus a lot of energy on many other aspects of the transition.

One of the “new” pieces of being in Seattle is making new friends.  Over the weekend we went to see the family of a four year old who was also born with myotubular myopathy.  Burke had met the family over the summer, but it was the first time visiting their home in Burien (south of Seattle) for Lucas and Krista.  Lucas was grumpy at first, somewhat unimpressed by Chris’s LTV 950 (the same ventilator as he uses) and other, similar equipment.  We watched in awe as Chris sped his power chair around the uneven terrain in the back yard, but for a while Lucas just asked to go home.  But then Chris got down on the ground with Lucas and showed him his toy school bus.  And Lucas lit up.  Chris was really great – willing to share his toys as well as his swing, and he signed Lucas’s name and even reached out to hold Lucas’s hand a few times.  It was incredibly sweet to see Lucas connect with another kid who’s experiencing life in a similar way, and really great to get to know Chris’s parents.

The other huge adventure in Lucas’s life was a visit to the Woodland Park Zoo to see the “real, live penguins!” for the first time (that’s what he chanted on our way to and from the zoo.)  We made the journey on Sunday morning along with his cousins, Aunt Ashley, Nonna and Papa.  Needless to say it was very, very exciting for Lucas.  He was so happy didn’t quite know what to do with himself other than say “penguin!” and “again!”, hoping that they would swim back by his perch near the water tank.  Check out some video of the magical encounter at the bottom of the post.

Penguins have helped ease the transition, but we can’t give them all the credit.  As we prepared for the move we wondered how Lucas would handle being in a totally different place after getting accustomed to his routine in Washington DC.  We had a feeling that being around family would help, but also knew that he would miss some of the people he was closest to in DC.

Mostly he’s adjusted well to his new surroundings, and seems to be enjoying some of the perks, for example calling for “fire” first thing in the morning on consecutive days last week (we had a number of early appointments so we told him he’d have to wait.)  But on Saturday morning the time was right so we indulged.  After the quick morning med routine, we brought him out into the living room and Burke built a roaring fire.  As Lucas laid back on the couch, perfectly angled so that he could see the fire and most of the rest of the room, he pointed out and proudly said “new house.” Indeed, though Lucas doesn’t yet have the vocabulary to really discuss the pros and cons of this new living arrangement, he’s given other sign of enjoying the new digs. We regularly sing the “Lucas song” in which he gets to insert a thing he loves for each verse.  Normally he just goes through every animal he knows, followed by each species of penguin. (The song can go on forever.)  But yesterday when we asked for another thing — Krista said, “what else do you love?” — Lucas said, “New House!”  And for the next verse, “Fire!”  And then back to “penguin,” “waddle,” etc.

Of course we really miss our wonderful community in DC too.  Fortunately some of you all are coming here soon!  We wish you all could be just a short walk or bike-ride away, popping in regularly to read penguin books or play with the animal cards.  But since the physical space no longer permits such visits, it continues to mean a lot to feel accompanied through this transition.  The move has been relatively smooth, but it’s nonetheless been exhausting at times.  So thank you for keeping us in your thoughts and for the many messages of support and welcome.

Krista turns 35 today!  We went for a nice morning walk to celebrate the occasion and have plans to get dinner with a few friends tonight.  Lucas still associates birthdays with his big #2 and therefore is convinced that Krista must also be in the same age range (when told she’s older than two he holds up three fingers and says “thweee!”)

Burke’s parents left late last week after a successful holiday visit.  They got to see Lucas in his prime and to join him gleefully reading books and playing memory games with his animal cards.  They also were around to witness his latest shift in favorite animals… from sharks to penguins!  An excellent new book called “And Tango Makes Three” helped facilitate the shift, along with a ridiculous video called “Antarctica Anthem” (watch at your own risk… the tune gets in your head.)

Part of the reason that Lucas loves the penguin book is that he’s also very into eggs these days, especially the idea that they turn into babies.  He still hasn’t figured out how it works – he insisted the other day during Krista’s telling of a story that a shark mommy and daddy managed to have an egg that cracked open to reveal a baby penguin – but he’s fascinated by it all nonetheless.

Here’s Lucas reading the penguin book for the tenth time in a row with papa:

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.

It was a beautiful day for Christmas so we went for a walk in nearby Rock Creek Park. Lucas made lots of requests to go “fast!”  Here are a few pictures and a video of us hanging out alongside the creek.  There’s also a shot of him playing bells for a special version of “Rudolph the Yellow-Nose Cow” – he insisted the Rudolph’s nose not be red and would only go along with the song in the first place if Santa was being pulled by cows…

Lucas also got a card from his cousins Madden, Tya and Ellody that made him very happy:

On November 18, two years ago, we brought Lucas home  from the NICU.  It was a day filled with so many complicated emotions.  We were simultaneously joyous about bringing Lucas home from the NICU, while also hiding our sadness at “graduating” from the NICU without knowing why Lucas couldn’t breathe or move like other kids (Lucas didn’t have a diagnosis until 3 months later).

Nov. 18, 2009 - the day Lucas came home

There was the amazing anticipation of getting home and finally just being the three of us, which we reveled in for about 10 minutes before the new, bossy professionals in our lives busted into our house and started telling us what to do (one condescending nurse supervisor in particular).

And then the moments that only seem funny two years later.  At one point the nurse supervisor told the respiratory therapist not to show us how to turn off the incessant beeping on Lucas’s pulseox monitor.  For a moment our guts sank as we imagined our home sounding like an ER for the rest of our lives.  And then our friend the respiratory therapist proceeded with his orientation to our home equipment, including showing us exactly how to turn the beeping volume up and down or completely off.  And then they all left, and we were happy.  And then the machine started beeping because Lucas’s oxygen level was dropping, and we were terrified.  And then we suctioned and used the resuscitation bag ourselves, proudly, for the first time without medical professionals standing next to us.  And we were happy to be home alone.  And then an overnight nurse showed up and we were both relieved and sad at the loss of privacy – perhaps for many years to come.

November 2011 - enjoying a fall tree swing

Two years later that all feels SOOOO long ago.  Nurse supervisors no longer have any power to scare us — we know that we can get any information we need, or doctors orders for the things we know are best for Lucas.  And Lucas’s health is so much better.  The regular adrenaline-rush episodes of blaring alarms and Lucas’s graying lips are extremely rare these days.  And we’ve gotten to know Lucas’s nurses so well that we are mostly just grateful for their loving care.

And finally, maybe most significantly, Lucas can now tell us what he wants and needs and doesn’t want.  And he revels in the power and does it ALL the time.  There are still moments when he’s so mad/upset that we’re left guessing (are you mad that I’m slow at retrieving you the turtle toy, or are you having trouble breathing?)  But usually our days are filled with conversation about animals, bird songs, bananas….  For example, overheard yesterday:

Lucas: BahnEEna, nahnEEna, nahnEEna (and banana sign)

Krista: We don’t have any banana, honey.  Do you want to chew on a piece of apple?

Lucas: (getting louder) BahnEEna, nahnEEna, bahnEEna

Krista: I’m sorry, we don’t have any banana.  You ate it all earlier this morning.  Do you want an apple or a pear?

Lucas: BahnEEna, nahnEEna, bahnEEna, nahhhhhneeeeeeeeennnnaa (frantic banana sign)

Krista: Lucas, I’m sorry. There’s no more banana.  I’ll get you an apple.

Lucas pauses.  And then, recalling that we keep overripe bananas in the freezer, slowly makes the signs for “cold” and “banana.”

And Lucas says: old BahnEEna, old nahnEEna, old nahnEEna….

(note: the “c” sound is still a tough one for Lucas, and he can only do “b” when he works really hard)

Two years after bringing home our medically fragile child from the hospital, we crack up at our little genius.  What other barely two year old is outsmarting his parents AND putting together multiple words in English and ASL, both of which are physically challenging for him?  Needless to say, Lucas gets all the bananas he wants.

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.”

"Some cuts don't heal".... "Our homes not nursing homes"

Last Wednesday we were excited to head downtown for the Medicaid Matters rally organized by the direct-action oriented disability rights group ADAPT.  In the days leading up to the rally ADAPT did sit-ins in various Congressional offices demanding no cuts to Medicaid and an end to the “institutional bias” that allows for people to receive coverage in nursing homes but not in their own homes (despite the fact that the latter is much more cost-effective).

Unfortunately, Lucas was feeling sick so we couldn’t make it to the rally in the end.  Still, we’re big fans of ADAPT and it was exciting to see pictures of so many people in wheelchairs taking part in a mass action.  Lucas hopes to make it out next time.

Senator Bernie Sanders summed it up well at the rally:

Right now we are engaged in one of the great political struggles in the history of this country.  On one side we have the wealthiest people in the country who have never, ever had it so good.  On the other side what we are seeing is 16% of our people unemployed and 46 million Americans living in poverty, and that number is growing everyday. So the issue we have to deal with right now is to determine whether [our] government is there to represent all of the people and not just the wealthiest and most powerful.  In America today… we are the only nation in the industrialized world that does not guarantee health care to all people as a right.  Not only should we strengthen Medicaid, not only should we makes sure that children and people with disabilities and low income people are not thrown off Medicaid, we should expand Medicaid and Medicare so that every person in this country regardless of income has health care as a right…

The issues around Medicaid cuts really resonate for us as some of Lucas’s health-related expenses are not covered by our primary insurance.  Having spent the first three-months of his life in the hospital Lucas automatically qualified to receive secondary insurance through DC’s Health Services for Children With Special Needs (HSCSN), a Medicaid-funded program (even though our income is well over the cap).  However, as we plan our move to the Northwest it’s unclear whether Lucas will continue to receive such secondary insurance.

Of course, the possible cuts that Republicans are pushing for (and which many Democrats seem all too willing to accept) will fall mostly on the backs of the poor and working class.  For that reason, we’ve been involved in campaigns pushing for the wealthy and corporations to pay much higher taxes.  This is the only way for the future which Senator Sanders speaks of – where all people are provided with the health care they need – to become reality.

Burke has been working on a series of yet-to-be-released short videos about Medicaid, Medicare, and Social Security that use personal testimony to convey the importance of these programs.  In the clip below, Patricia talks about the enormous impact of Medicaid on her family’s quality of life:

Meanwhile, last Friday was the Washington DC reading for the Rad Dad book (pick up your copy today if you haven’t already – it makes a great gift!)  We were really happy to see a lot of our friends at the event and it felt good to share Lucas’s story publicly.  Burke discovered that his piece “Upside Down Lucas” is not an easy one to read out loud since it’s rather emotional.  However, it does well to express the challenges of disability in a way that (hopefully) encourages others to think more deeply about making the world an accepting place for all people.  In that way, it feels important that the book includes an essay about special needs parenting, and so far it has gotten a good response.

We hope to someday add a bunch of parenting, special needs, and disability rights resources to this blog so any suggestions you may have would be much appreciated…