Lucas Camilo

First of all, we survived yesterday’s earthquake.  Apparently many people throughout the city had to evacuate, including the White House, Congress, the Pentagon, and DC public schools.  But Burke was on his bike and felt nothing, Lucas was napping and felt nothing, and Krista ran frantically back and forth between Lucas, his vent, and the door frame for the 30 seconds the quake lasted.  The upshot for us was that the roads were clogged, so we canceled a drive to Virginia and instead went for an afternoon walk in a new section Rock Creek Park.  We found kids riding horses, and Lucas was very excited to meet his first extra-large mammals up close. (Apparently the flamingos, red-ruffed lemurs, gorillas and orangutans at the zoo all knew the earthquake was coming before it hit, but the horses seemed totally unfazed an hour after the quake.)

Anyway, the bigger news in Lucas’ life is that over the weekend we threw a real birthday party for him.  Our upstairs neighbors let us use their space, and we got out the streamers, balloons, and birthday candles to do Lucas’s second birthday right.  He was a great sport and showed his “two” fingers when anyone asked how old he was.  We brought a big pile of his favorite books, and then he got more books as presents, so he spent much of the party happily geeking out on animal stories.  But we also forced him through the candle-stuck-in-tasty-food ritual (for Lucas, a banana), and sang him the birthday song.  He did really well through it all, and it wasn’t until we helped him blow out the candle and everyone clapped that he lost it.  Lucas apparently still hates clapping, and he let it be known with huge, puddley tears.  But once that was over and he got to shove the banana in his mouth (while reading books) he was back to his party animal self.

Thanks everyone for the blog/email/party-going birthday wishes.  Indeed all three of us had a great second birthday!

Believe it or not, Lucas turns two today.  The past two years of life with Lucas have been a blur at times, including great new experiences, inspiration and happiness but also major challenges that we could have never imagined when we signed up to be parents.  We talked about what to write today, having composed some longer reflections back when Lucas turned one.  But all we can think about is how much we love Lucas and are overjoyed to have him in our life.

Our friend Tom composed an awesome song for Lucas back when he was still in the NICU.  It’s called “Keep on Growing” and he recently updated it and posted it to Grooveshark for Lucas’s birthday (click the link or listen below).  It still brings tears to our eyes when we hear it, remembering back to those days in the hospital.  Today when we played it for Lucas he smiled wide and pointed to himself over and over .  Without us saying it, he knew that the song was about him.  Smart kid.

So happy birthday Lucas – we love you lots!

This morning was to be our big “March for Babies” walk, starting out at the Washington Nationals stadium and weaving 3 miles through Southeast DC.  We had 9 people signed up as part of Team Lucas Camilo, and brought in $485 in donations (thanks to all who pledged to participate and contribute!)

The only problem was that Lucas didn’t want to go… or rather, he came down with a cold and fever the day before the event and so we had to cancel for him.  The timing was certainly unfortunate, and frankly we were worried for a little while since he he got hit pretty hard.  Burke found Lucas with snot flowing out his nose at 3 am on Friday, and by 9 am he had a fever of close to 100.  That’s the highest fever he’s ever  he had — the last time he had a temperature was when he had a nasty UTI back in the NICU.  Each time he woke up from a short nap he would lie there cringing and wimpering, and by noon we were considering whether to take him into the ER.

But here’s the good news: with some extra naps and lots of love – and a dose of children’s tylenol – Lucas has recovered remarkably fast from the bug.  By late Friday afternoon he was already demanding the swing (despite himself), and this morning he pretty much seemed back to normal, other than the still flowing snot.

Since we missed the big walk today we’re planning on gathering Team Lucas Camilo for a long walk next weekend.  So if you’re around next Sunday morning, come join us for a stroll in Rock Creek Park!

Today was another beautiful day in Washington DC, so this morning after physical therapy Krista and Lucas went outside to bask in the sun… and play and study.  Krista is nearing the end of her yoga teacher training program, so she took flashcards out to practice her Sanskrit.  Lucas, meanwhile, is more and more motivated to practice sign language, so he took his new baby ASL flashcards and went through the deck signing “swing” and “book” and “more” at the pictures on the cards.  It was a very productive morning.  (Lucas also took breaks from studying to taste and kiss the cards.)

Besides giving a Lucas update today, we also wanted to share some news, projects, and interests that have our attention right now, and invite you to join us in supporting any or all of them if you’re so inspired.  We’re sharing this list in part because people have asked us if there’s a foundation or organization where they can give donations to support Lucas and children like him.  So here’s an attempt to start a list like that.

First, this past weekend was the national “fun run” fundraiser for ADAPT, an amazing national grassroots disability rights organization.  The “run/walk/wheel” event was on Sunday, and then on Monday, a group of ADAPT activists went to Congress to protest the Republican-proposed cuts to Medicaid.  They occupied the rotunda of one of the Congressional office buildings, and 89 activists were arrested.  One of their main demands is for Medicaid funding to continue to cover in-home services so that people with disabilities are not forced into institutions, which of course are more costly AND often less humane than allowing people to stay in their homes.  This issue obviously resonates very personally for us, since at one point we had to fight to get in-home services in place to be able to bring Lucas home.  So we’re excited to be supporting ADAPT (together with Krista’s yoga students who also donated to the fun run!), and wanted to invite others to join us.  You can donate to ADAPT here.

Lucas in training for Saturday's walk

This weekend we’re going out for the DC March of Dimes “Walk for Babies.”  We figured this might be a fun, accessible public event that Lucas would enjoy participating in.  (As opposed to a raucous street protest with giant horns and puppets.  We’ll see what he thinks.)  The March of Dimes does good work to improve accessibility of prenatal health care and to support preemie families.  When Lucas was in the NICU we got orientation materials from the March of Dimes, and now we’re on the Parents Advisory Council that they coordinate.  So we’ll be walking (and rolling) as Team Lucas Camilo.  You can sponsor our team online by going here.

And then there is the cause that is most directly linked to Lucas.  A number of MTM families are walking in June to raise money for the Begg’s Lab research on Congenital Myopathies (the category of disease that includes Lucas’s neuro-muscular disease, Myotubular Myopathy).   Although we generally assume that the research has a long way to go before it translates into possible treatments or cures, we’re excited that there’s some hope for treatment in the not so distant future.  And in any case, we’re happy to be supporting this walk!  If you want to learn more about the walk and the Beggs lab, go here and to donate to support myopathy research, go here.

And in news less directly related to disability and disability rights, we’ve been following the case of an experienced Virginia home birth midwife who is being prosecuted for a baby’s death at a birth she was attending.  It is a long story that you can read some about in this Washington Post article.  In the words of our midwives Mairi and Erin (who followed Krista’s pregnancy and would have attended our homebirth had circumstances been different), “Since her arrest Karen has been ordered not to attend any more births.   Already there are not enough midwives to meet the needs of women and families seeking home birth in the DC Metro area.  We turn families away every month.  Karen has attended over a thousand births.  She has been tucking mothers and babies safely into their beds after birth for 20 years.  There isn’t a midwife available to replace her… Karen faces spending the rest of her life in prison.”  Even though Lucas needed to be born in a hospital, the prenatal experience we had with midwives was wonderful.  And should we ever get pregnant with a Lucas-little-sibling, we’ll want the support of home birth midwives again.  Mairi and Erin suggest that to support Karen and midwifery more generally it’s important to counter negative depictions of midwives with positive stories.  So if you have those, you can share them here and here.  And we’ve also donated to Karen’s legal defense fund.

And finally, if you asked Lucas how you could support him, he’d make two fists and enthusiastically rotate them back and forth in his patented sign for “swing.”  So if you’re around DC, come over and give Lucas a push!

Yesterday we decided to take Lucas down to the White House for his first ever political demonstration (note: this is a long post – scroll to the end if you just want to see pictures).  In the past, we’ve lamented that Lucas’s disability and medically fragile state has prevented us from being present as a family at marches and rallies, which is sad because getting out to a good protest is something we love to do.  But since Lucas has gotten stronger and we’ve become more confident in traveling around with him, the time seemed right to break through the protest-barrier.

They were two other reasons that this seemed like a perfect first march for Lucas.  First, the weather was great – warm but not too warm, with clouds in the sky but no chance of rain (Lucas can’t handle the bright sun and doesn’t much care for his sunglasses either).  Second, some of our friends have been working for the last week to build festive, giant puppets to parade through the streets of downtown DC.  This was not going to be your typical somber anti-war protest but rather a celebration of “disarm-ageddon”, complete with creative “art-tillery”, puppetistas, a festive marching band, and plenty more colorful props.

We assumed that bringing Lucas along for the entire march (from Dupont Circle to Lafayette  Park) would be a bit much so we parked within a couple blocks of the White House and then walked back towards the approaching crowd.  Once we saw them coming we perched ourselves on a street corner and got Lucas ready to raise a revolutionary fist.  Everyone was overjoyed to see him – some friends on stilts approached, dressed up as the “four horses of the Apocalypse” (see photos) and waived, while another friend with a horn came over and honked in front of us.  Lucas seemed calm (if a little overwhelmed by it all), so after the bulk of the march passed by we decided to jump in and join some more friends who were pulling up the rear.

And that’s when he lost it.  Maybe the noise of the band and the chants became too much, but all of a sudden Lucas got an extremely angry look on his face, and then he just stopped breathing.  He was connected to his pulse-oximeter but it was too loud to hear the alarm, and besides we can usually tell that he’s losing color well in advance of the machine starting to beep.  With his lips started turning blue we quickly got over to the side of the street, pulled out his resuscitation bag, and gave Lucas some manual breaths as the march had moved ahead.  In the midst of it all a nice person in an SUV drove up and asked if he should call an ambulance; we laughed nervously and said that everything was under control.

And indeed it was.  One could perhaps accuse us of being irresponsible parents for bringing a ventilator-dependent child to a raucous protest, but we swear that weren’t putting Lucas in any serious danger.  Sure, he was pretty angry with us at the time, but when we laugh with him about this story some day in the future we hope he’ll recognize that we just wanted him to have a diversity of experiences, and that inevitably a “first-time” like this can be a little jarring.  And though the sight of us using a resuscitation bag on the street corner was probably alarming to a lot of people (much more so than the passing of a urine sample – see our previous blog post), it’s a routine that we’re now quite adept at.  In matter of seconds the color was back in Lucas’s face, and a few minutes later we were ready to roll.

Since he seemed to have calmed down we tried once more to merge into the back of the slow-moving march but once we got close to the noise Lucas again got angry and stopped breathing.  So we motioned to our friends that we’d take an alternative route back to the White House and left the hundreds of festive protesters behind.

Ultimately we found a spot in Lafayette Park about 50 feet from where people were streaming in and sat back to cheer them on.  We got to say hi to Christie and Oz, frequent blog followers who live in Boston and who have therefore never met Lucas, as well as hang out and take pictures with Franny (who accompanied us when we split off).  We tried to explain to Lucas why we were protesting the government on this particular occasion – it involved cutting off funding for the “School of the Americas” plus other US-sponsored military ventures in Latin America – but he didn’t seem to interested.  In the end, we lowered his chair down and just let him chill amongst the blooming tulips; that was about as content as we saw Lucas all afternoon.  Until we got home and he was as happy as can be…

Thanks everyone for the comments and responses to the Lucas swinging video.  We’re always happy to hear that this blog helps spread Lucas’s joy beyond our apartment walls.  And today we’re happy to report that Lucas just keeps getting smarter and cuter every day.  We’ve been playing lots of “where’s your nose/mouth/tummy/ear” lately.  Lucas has perfected a very deliberate “point,” slowly wrapping his thumb and last three fingers down and holding his index finger up as he hoists his hand toward different body parts.  Yesterday, mid-hoist, he stopped the game to admire his index finger.  And as he was admiring it, he figured out that he could hold his hand and wrist still and isolate his finger, moving it back and forth.  He smiled proudly, and we laughed at the cutest finger wag we’d ever seen.

Meanwhile, we’ve been invited to join the NICU Parents Advisory Council at Children’s National Medical Center (where Lucas spent the first 3 months of his life), so on Saturday Burke stayed home with Lucas while Krista went to the first of our monthly meetings.  The Parents Council has been around for years, and they’ve played a big role in making the NICU better comply with the hospital’s stated mission of being “family-centered.”  Parents from the council designed the lactation room, which Krista took full advantage of during our time there.  And the council advocated for the hospital to change its visitation rules so that parents could stay in their babies’ rooms during the doctors’ rounds each morning.  It’s something we took for granted: longtime readers of our blog will recall many a story from the daily rounds that we sat in on.  It was a critical way that we were able to feel informed about Lucas’s care and progress, and it was almost the only way we were able to give our input and influence their plan for Lucas.   As activists we of course get all excited at the possibility of helping influence systems-wide change, so we’re hoping the council will be a place where we can use our experience to make the NICU even better for families in the future.

(It’s supposed to be sunny and over 70 by Friday!  Lucas is worried it may be too warm for the cousins hand-me-down jeans jacket he’s barely sported this spring…)

Finally, though Lucas has no sense of the catastrophe half way around the planet – no sense of a planet, for that matter – it’s hard not to be completely weighed down by heartbreak at the worsening news from Japan.  We’re so sad for the people who have lost family members and homes and communities, frustrated international energy policy, afraid for the people anywhere near the melting down nuclear power plants, and moved by the stories of people taking care of each other.  In moments like these we inevitably feel particular worry and empathy for families with disabilities and medical needs, wondering what we would do if the power were out for five days.   Like the people in Japan right now, and like we’ve done for the last year and a half, we’d probably depend on the graciousness of friends and strangers to make it through.

In case you missed it… Lucas got pretty excited watching Mubarak finally get booted from Egpyt on Friday!

It’s been a good 372 years since the last time a full lunar eclipse coincided with the solstice so we decided it was probably an auspicious moment worth celebrating.  Monday night we dragged ourselves out of bed at 3 am and went outside for a few minutes of viewing the huge, reddish-brown full moon.  Everyone’s probably already seen a million pictures, but if not, here’s a cool time-lapse video.  It was pretty astounding.

Then on Tuesday night a few of our friends came over for a solstice dinner.  We’re not usually such committed pagans, but it seemed like an important year to be with friends on the darkest night of the year.   Lucas sat in his chair on the floor and played.  He seemed to enjoy the small party around him, as the rest of us ate barley soup and hung out.  We also shared a little about the “darkness” in our lives – both the parts we find useful and the ones we’d like to let go of – and we ended the night with a small fire in the back yard.  Thanks to Max, Jess, Ilana, and Buddy for sharing in on our mini-ritual!

Meanwhile, Lucas has been surrounded by lots of friends lately.  Last week Sha came by and was able to hold Lucas for the first time since his surgery a month ago.  And Lucas enjoyed a long snuggle-turned-nap with Heyward right before she left for Colorado.  Heyward has spent a lot of time with Lucas this fall and he’ll definitely miss her while she’s gone!  And then Krista’s good friend Alice was in town visiting from Michigan last weekend.  Alice is in the thick of writing a brilliant dissertation about workers centers, immigrant rights and social justice movements, which made it all the more amazing that she could drop it all to come cook food and sing nanananana with us for a few days.

Speaking of the nananana song, Lucas is making major strides in his communication.  He’s learned to recognize a handful of words, going beyond waiving when someone says hi or bye.  Over the weekend he started bringing his thumb and pointer finger together in the gesture made at the start of the Itsy Bitsy Spider song.  Now whenever we say “itsy bitsy” he immediately makes the hand sign, and we go crazy laughing and applauding and then sing him the song.

The hand signs are exciting since it means Lucas is moving towards learning basic sign language even before he can speak.  But he’s certainly not afraid to speak his mind either.  His voice is getting louder and louder, and he was especially inspired in his bath the other day.

We’re looking forward to Krista’s mom and sister arriving tomorrow night and then Burke’s parents coming in early next week – it will be wonderful to share the holidays with all of them.