Lucas Camilo

Burke is in Seattle and on Whidbey Island for the weekend, both for meetings and to get some time with his family.  The first day Burke was gone Lucas acted like it was no big deal, but soon after he started missing his daddy, which he told him on the the phone last night (see video below).

His Gramma Susan flew in yesterday, and Lucas has been having fun showing off all he’s learned to do since he saw her last.  Susan brought more birthday presents, including tie-died socks to match his tie-died shirt.  The whole outfit, together with the gut he’s developing, makes him look like an aging hippie.

Friday and Saturday nights Lucas doesn’t have a nurse overnight with him.  Susan is staying across the street with our neighbor, Mary, so last night was the first night Lucas and I (Krista) had ever spent alone together.  I was definitely a little bit nervous, hoping Lucas wasn’t falling asleep thinking about how his daddy is always faster out of bed and more alert when alarms go off in the middle of the night.  Fortunately the only alarms that went off over night were benign — I hadn’t plugged the monitor in all the way so the low battery alarm sounded; then I didn’t reset the food pump correctly when I fed him at 3:30 so another alarm went off 20 minutes later.  Lucas slept through it all though and breathed steadily all night long.  He was in a really good mood when he got up this morning, which I took as affirmation that he trusts me to do this more often.  I told him it’s a deal, as long as he doesn’t tell his daddy I can actually respond coherently to alarms that go off after midnight.

Here’s a snippet from Lucas’s long tirade last night.  Burke had Lucas on speaker phone so his cousins could talk to him, too.

Translation: “I love you and miss you, Madden and Daddy.  And come back soon.  And Mommy says Washington is nice but Oregon is nicer.  Na-na-na-na-na-na-na.”

Lucas had a nice birthday and a great week in general.  We’re not sure that he really noticed that anything extraordinary was happening on Tuesday, except that he was forced to wear an annoying hat, and that all of a sudden there were some fun, new toys to play with (not to mention wrapping paper to throw around).  He smiled most of the day on his birthday and was also happy to have aunt Alice around singing to him all week… plus, she brought along a favorite gift: the chewable book!

Our week was busy so it wasn’t until Sunday morning that we finally got to spent a couple quiet hours together with Lucas, reflecting on his first year of life.  It was emotional to re-read some of the things we’d written during a year ago, like the first-ever post to the Lucas Camilo blog, four days after he was born.  The details of that week will forever be etched in our minds, and we recalled not just the many harrowing moments but also the few positive, hopeful ones.  One of the most jarring things was to see that we actually predicted that Lucas had a neuromuscular disease in that first post, only to move away from the theory (based on observations of various specialists) the following week.  It wasn’t until more than 5 months later that Lucas was in fact diagnosed with a rare neuromuscular disease, Myotubular Myopathy.

Another thing that’s interesting is how much our perspective on that possibility-turned-reality has changed.  The thought was devastating at the time, and we continued to hope that his premature birth and low muscle tone were caused by a central nervous system issue, of which there was supposedly a chance of recovery.  We realize now that we didn’t have much if any knowledge of muscle disease, nor had we ever encountered people who lived fulfilling – albeit challenging – lives with such diseases.  Our initial fears were about all the things that Lucas would never be able to do in the world; that of course is still there, but our overall framework has shifted, especially after getting to know this amazing little guy.  Now, rather than thinking too much about the doors that are closed because of his disease, we think more about the doors that have been and will continue to be opened by this experience we’re sharing together.

That being said, we also marveled at how upbeat and lucid some of those early posts on the blog actually were.  There was so much that was unknown in Lucas’s first days and our daily discussions with specialists and neonatalogists felt like a blur.  We somehow managed to stay strong and make it through, even in those moments when the possibility arose that Lucas might not survive.  And it wasn’t just that first week that was tough – our reflection on Sunday helped put in perspective the weightiness of all that we’ve been through the last year.  It felt good to acknowledge to ourselves the huge accomplishment that the three of us had achieved just by that fact that we were all sitting together in the same room, smiling and playing, a full year after Lucas was born.

And of course, it wasn’t just the three of us that made that first year possible.  Another striking reflection was how much support and encouragement we’ve had from friends and family over the past year.  From Burke’s parents and sister and Krista’s mom showing up days after Lucas’s birth and bringing amazing love and support, to a dozen friends coming out early that following weekend to help us move all our stuff to a new apartment, to dozens more who brought plates of food to our doorstep, to every single card, phone call and blog comment (we just passed 1000 comment the other day :)  Indeed, we were somewhat amazed looking back that we had the wherewithal to publish this blog (on August 21, 2009) but we’re sure glad that we did.  It gave people a way to follow our story and be supportive during moments in which we didn’t feel like getting on the phone or taking visitors.

So one more time we want to thank all of you for your love and support.  We look forward to continuing to share our journey with all of you.

Oh yeah, and here’s some video shout-outs for Lucas! (some of these got lost, unfortunately)

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Happy birthday Lucas!  It is hard to believe that it’s been a year since you were born.  Of course, the concept of calendar years are still a little beyond you, but it was on this day exactly a year ago that you arrived in this world, emerging in a small delivery room in Washington Hospital Center at the same time as a brilliant sunrise took over the morning sky.  There is no way a blog post could contain all the love, excitement, and emotions involved in marking the completion of your first year with us, except to say that we can’t wait to see what your second year unfolds.  We love you.

PS: we extended the video-shout-out-to-Lucas deadline for a few more days so there’s still time… thanks to those folks that already uploaded a video comment for Lucas!

(note: it’s not to late to send a video comment to Lucas for his birthday.  Just click on the comments link below and follow the directions on the previous post.)

This past weekend we took Lucas on his first overnight trip, and it was a huge success!  We drove two hours to a farm in central Virginia to join nearly 40 CISPES activists (for Lucas’s not-as-regular blog followers, CISPES is the Committee in Solidarity with the People of El Salvador) for our biennial “summer camp.”  The camp is a mix of workshops, strategy sessions and building community all rolled into one long weekend, and for the two of us the gathering has been a regular part of our summers since 2004.

This year summer camp was held on a big, historic farmhouse surrounded by lawn and rolling hills of pasture land.   Lucas seemed a little overwhelmed at first by everything new about the place, including being surrounded by so many people who wanted to meet him.  But he is such an easy going guy that he took all the newness in stride and quickly was acting like he’d lived on a rural farm all his life.  We set up a blanket out on the lawn for him and his equipment right next to the place people often gathered, and we were able to both hang out with Lucas and participate in workshops and discussions.  Lucas was especially happy about being on the lawn because he could reach the sticks and put them in his mouth — his first real taste of dirt, and of the great outdoors.

Meanwhile, we were able to relax and participate in the discussions and workshops about El Salvador, youth organizing, bilingual meeting facilitation, anti-racism, social media, and grassroots fundraising.  Although workshops and strategy sessions aren’t everyone’s idea of a relaxing weekend, for us it felt incredible to be able to combine our political/activist lives with our parenting, and to share Lucas with our friends and compas in CISPES.  We got to see Audelia, a Salvadoran ex-guerrilla turned legislative deputy/ leader within the leftist FMLN party… not to mention a mother of three.  Last spring when she was in Washington DC for a CISPES tour we got to spend a couple days with her while Krista was pregnant, and we talked with her about politics, parenting and the tensions and joys of combining the two.  So it was exciting to reconnect and introduce her to Lucas.

There were many other highlights throughout the weekend.  Lucas fell asleep in Burke’s arms as we listened to Salvadoran-American youth  share some of the the emotional journey they recently went through on a CISPES delegation to El Salvador.   Lucas was often surrounded by friends and more than once we were able to casually turn to someone to say “can you watch Lucas while I run inside?”  And we felt OK regularly interrupting discussions by firing up Lucas’s suction machine, knowing that were surrounded by loving friends, old and new, who valued having Lucas there enough to either increase the volume of their workshop or wait through the suction session to proceed.

We planned to stay overnight Friday and come home Saturday, but all three of us were so happy to be there that we ended up staying a second night.  The return trip was uneventful, and the hardest part was motivating to unpack everything we had packed up on Friday – needless to say, all Lucas’s equipment and spare parts, on top of the normal baby stuff, makes for a full car.  But even though it’s not so easy to travel out of town with Lucas, we came away feeling that it’s 100% worth it!

Since we started created Lucas’s blog when he was 5 days old, the various videos we’ve shared have been amongst the most loved items for Lucas’s loyal followers.  From his very first video when he was just 13 days old (he’s looking pretty rough!), to the classic “Who’s my favorite Friend” series, to the inauguration of the Whale Bath during which we witnessed more smiles, kicks and noises from Lucas than ever before, the short videos have been a great way to demonstrate the growth and progress of a little guy that doesn’t get out so often.

In anticipation of his coming first birthday we’ve decided to make the power of video available to all of you!  That’s right, in lieu of presents we’re asking for friends and family to post video messages (however creative, serious, or goofy you wish to make them) to Lucas’s blog. (Ok, and we realize he’ll probably get a few material gifts too, but if you’re thinking about getting him a vintage Supersonics onesie you should know that he’s already got one :)

If you click the “comments” link at the end of this post it will take you to a page with a button to “submit video comment”.   Enter your info, click on that, and then select “USB video class video” if you want to record from a webcam and “upload” if you’ve got a video file already prepared.  Next week on Lucas’s 1st birthday (August 17), we’ll post the series of video gifts presented to Lucas and the Stans-Hanson family.  Of course, if you want to send a video message but don’t want us to post it publicly that’s cool too… just let us know.  And thanks for playing!

PS: speaking of the power of video, the “We Are America” immigration stories project that Burke’s been working on succeeded in publicizing the story of Yves Gomes, who we mentioned on the blog a few weeks ago. Yves was set to be deported on Friday but through the advocacy spawned in part by the video Burke worked on, the Department of Homeland Security granted Yves a 2-year deferral on his pending deportation!  Watch the original video here and read the story of Yves from the front page of yesterday’s Washington Post.

This morning Lucas had an appointment at the “equipment clinic” to get fitted for his new chest braces that are supposed to help him sit up straighter.  He didn’t love them, but we’re hoping that as we begin to experiment he’ll come to find the braces more helpful than restricting.

Usually we both go with Lucas to his appointments – in part because we both want to be there to learn and quiz doctors and specialists, and in part because Lucas needs someone sitting with him in the back seat at all times.  But this morning Lucas’s nurse Florence was here, so she and Burke took Lucas to the appointment while Krista stayed home to get other things done.

We haven’t written much here about Lucas’s nurses despite the fact that they are a pretty big part of his life.  Although we still wish we didn’t need nurses to help take care of Lucas, we are grateful to have found two great nurses to spend certain nights, mornings, and afternoons with Lucas.  And, since we’ve gotten to know them pretty well over the past six months, we thought we’d share a little about them on the blog.

Victor started working with Lucas in December, shortly after we came home from the NICU.  Victor grew up in Sierra Leone and came to the US in the 90s.  He originally studied agriculture, but about ten years ago he was in a major car accident.  Through his time in hospitals during the initial recovery and later going through more than a dozen surgeries, Victor says he – like anyone who’s spent a lot of time in a hospital – came to appreciate the job of a good nurse.  So he decided to change paths, go back to school, and he became one.

Victor spends four nights a week with Lucas, and for three of them he stays on until 11 am in the morning.  Often Lucas is still wide awake and happy to see Victor when he arrives at 11 pm, so they play together until Lucas falls asleep.  Luckily for Lucas, Victor is a skilled whistler, so it is not uncommon for us to fall asleep to the sound of Victor whistling and Lucas cooing back his approval.   In the mornings Victor helps us with Lucas’s routine and stays around long enough to do some exercises and play with Lucas.  Of course, Lucas’s morning routine includes our morning routine, so we often end up talking about the news on the radio or in the paper.  Victor swears that he’s not interested in politics, but he’s quick to rant with us – in his big, enthusiastic voice – about the DC mayor’s latest affront to the poor, or about BP oil executives, or about management mistreating workers.  Victor is engaged to be married and, although he doesn’t have a date set, he’s also been explaining to us the different wedding traditions in Sierra Leone and how he and his fiancé are adapting them to their lives in the U.S.  Since we have so much of our lives exposed to our nurses, it’s felt nice to have Victor share some of his stories with us.

Lucas’s other nurse is Florence.  She started working with Lucas in the spring when Burke went back to work full time.  Most of the nurses that do in-home care in Washington DC that we’ve met so far have been from west Africa, but Florence is from Uganda.  She has also been living in the DC area for over 15 years and has worked as a nurse for most of that time.  Florence has two young kids of her own, so besides her skills as a nurse she also has experience (and preferences) around raising kids.  Florence is with Lucas two afternoons a week and one night so it’s nice that most of our child-raising philosophies overlap.

For example, Florence is a big fan of our cloth diapers and our attempts at reducing waste – a concept that was a stretch for some of Lucas’s nurses back in the beginning.  During the day Florence plays with Lucas, taking him through his different sitting and reclined positions and the toys he can reach and play with in each position. Florence reads to Lucas regularly, which Lucas especially loves because Florence is good at positioning him so he can reach out and turn the pages, something that makes Lucas extremely happy.

The greatest thing about Florence and Victor is that they’ve both come to love Lucas, and we trust them not just technically but also to really care for Lucas when we’re not here.  For that we feel very fortunate.  But to be honest, it’s still sometimes incredibly challenging.  For example, sometimes we have different opinions about the frequency and technique of suctioning Lucas, or how often to change his trach.  But at least for now, those moments of tension are outnumbered by the pleasure and comfort we get from seeing Lucas enjoying his time with Victor and Florence.

It’s hard to believe that it’s already August, meaning that it was exactly a year ago that we were hanging out at Swedish hospital in Seattle, trying to figure out why Krista had gone into early labor (more on that later).

It’s equally hard to believe that Lucas is becoming a little person of sorts, all 21 pounds of him.  As wispy blond hair fills his head – albeit somewhat unevenly – and more sounds continue to emerge from his mouth, a real character is taking shape.  Perhaps most spectacular is to see Lucas’s beaming smile, which is happening more and more often these days.  There are things that make Lucas happy and things that make him mad, and as his condition slowly improves he is better able express his emotions.

Lucas had surgery on his ears a month ago and it’s becoming apparent that it was successful, in so far as Lucas is hearing more and responding to the sounds around him.  Among his new favorite things is the sound of whistling (both Burke and nurse Victor are skilled whistlers, while Krista is practicing and getting better every day).  He likes to hear Pete Seeger and Bob Marley songs whistled, and perked up when our friend Max whistled a little John Philip Sousa last week.  He also likes the squeaky giraffe and other high pitched sounds.

The experiments Lucas is doing with his voice also make it clear that he’s hearing more.   In addition to the whale sounds we featured on the blog, he can now say “naa-naa-naa-naa-naa” on and off for about an hour.  It’s hard to pinpoint why he decides to speak incessantly at certain times while going silent at others, but given the challenges of vocalizing with a tracheostomy and ventilator, it’s always exciting when he does speak.  Meanwhile, he’s been playing enthusiastically with the new mobile cousin Madden helped make for him, and getting more into staring at himself in the mirror as well as spinning the little ball at the base of the mirror.

Finally, we decided to pull out the hammock last weekend and hang it in our living room for Lucas.  He was already a big fan of rolling and bouncing, so it wasn’t a big surprise when he lit up in the swinging hammock.  It’s now become a part of his daily routine.  So while the heat wave has prevented us from going outside much with Lucas lately, all these exciting new things have kept him busy and prevented him from getting too restless.

As we mentioned before, the conclusion of July brings back memories of the ordeal we found ourselves in exactly a year ago.  Some of you may have received a series of emails – later reprinted on this blog – that we wrote after Krista went into early labor on the airplane (!!) to Seattle in late July of last year.  We’ll never forget that day and how Lucas was nearly born at 28 weeks.  Luckily, labor was stopped and Lucas held off for another three weeks, waiting until the day after we flew back to DC to be born.

Reading over our uncertain reflections from a year ago is strange.  We were heartened by a negative chromosome test that we assumed had ruled out the possibility that Lucas had a genetic disorder.  Of course, the test only screened for common conditions like Downs and not ones like MTM that effect 1 in every 100,000 babies.  Muscle disease actually was brought up as a possibility for why Krista had excess amniotic fluid back then, but since she was feeling kicks in her belly we ruled it out.  In retrospect this makes sense: though Lucas still doesn’t move his legs much when lying in bed, if you put his lower body in a tub of water he’ll start kicking all around.

We’re thankful for the support that we received when things first got scary with Krista’s pregnancy, just as we continue to be grateful for all the love and encouragement over the last year.  Lucas has come a long way and when we remember back to those scary days in the hospital a year ago we mostly just feel lucky to have him in our life.

Here’s the latest Lucas photo album, highlighting some special moments from the last 2 months: