Lucas Camilo

Over the holiday weekend we ventured out for our first ever “family vacation.”  We were fortunate to have been invited to stay at the Randolph’s house in Clark County Virginia, known to all as the River House (it’s near the beautiful Shenandoah River).  Below is a photo story of the experience using some fun software that Burke discovered through his job… just click on the first thumbnail image to start the slide show and then click on the right side of the larger image to continue scrolling through.

Although he missed his daddy, Lucas had a great extended weekend with his Gramma Susan.  Lucas seemed excited to have a new audience (of one) who appreciated all his developments: his singing, his increasing precision of head and arm movements, and his late-night goofiness.  In fact, we had thought that he was starting to develop a slightly earlier-to-bed routine, but while his Gramma was here he pulled out all the stops to stay up late playing and giggling.  Lucas still doesn’t make any sound when he laughs, but that somehow makes his super-wide-mouth full body laugh all the more irresistible.

Lucas’s great passion these days is reading.  Or more specifically, page turning.  While most toys seem to bore him after a short while, he lights up every time he sees a book coming his way.  It doesn’t seem to matter to him whether it’s a book he’s read a thousand times or for the first time, whether it’s a cardboard page book, a cloth book, or a paper book.  His Gramma obliged him over and over and over again, holding books at just the right angle so he could grab and turn the pages.  In the video below he’s so happy turning pages that his feet are wiggling in delight.

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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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.