Lucas Camilo

2010, the first full year Lucas lived from start to finish, is over.  It’s one of those years that went by way too fast, with a lot of ups and downs and blurry periods in between.  We thought about writing a little “best of” list as part of this blog post, but didn’t get around to it since we’ve been so busy with family in town.  And besides, we’ve got more important things to talk about: an update on Lucas.

Family visits always seems to bring out the best in Lucas and this one has proved to be no exception.  Krista’s mom and sister arrived on Christmas Eve and left on Thursday and in between got a lot of quality time with Lucas.  Burke’s parents arrived Monday, overlapped briefly with Megan and Susan for a few days of flurried activity around the Han-Stans household, and are still here through early next week.  Everyone is amazed by how much Lucas has grown lately, and happy to see him in good health.  Most exciting for all of us are some small but significant developments in the past few weeks.

As we mentioned in previous posts, Lucas is becoming more and more interactive.  He’s got his “itsy-bitsy” spider hand-movement down, along with the hello/goodbye waive, along with the high-five, and a few other tricks he’s working on.  He has become more and more deliberate with each motion and seems to be more confident about what exactly is going on when each motion is made.  Meanwhile, just in the past few weeks Lucas has began really showing his enjoyment of different sensations, in particular feeling with his hands.  We’ve built up quite a collection of “touchy-feely” books and his current favorite is “Where’s my Snowman?,” which his Great Aunt Penny and Great Uncle Steve gave him for Christmas.  The other day Lucas was sitting up in his chair and kept flipping back to the page with the fuzzy mittens, and then running both hands over the rough green, surface as he smiled with glee.  When we turned a few pages to the one with the snowman’s rough buttons, Lucas would feel the surface for a moment before slowly and deliberately flipping the pages back to the green fuzzy mittens.  Then he’d smile and rub both hands over the pages again.

Lucas is also becoming so much more playful with his actions.  And like any kid his age, he enjoys constant repetition of a new favorite game.  He loves to grab a rattle or wooden spoon and launch it over the side of the crib, only to have his daddy pick up the object in question and place it back within his reach.  He then launches it over the side again and wiggles with glee as Burke disappears to pick it up, a moment that is often drawn out as Burke hides out of sight, waiting to bounce up and hand Lucas the rattle once again.  This went on for a good hour the other night, and it was nearly 11 pm by the time Burke threw in the towel and hid the rattle away for the evening.  A few nights later it was Papa’s glasses that provided the object of the game, with the challenge being to reach up, grab them in the middle between the eyes, and slowly pull the ends over Papa’s ears… followed by triumphantly shaking the glasses in the air once they were free of Papa’s face.

The other thing that is really cool is how much Lucas recognizes us these days… and how much he shows it.  It could be that for some time he’s gotten excited when mom or dad comes home after being gone for the day, but has been unable to express his excitement because of the limitations of his disease.  Whatever the case may be, lately when one of us walks into the room and says “hey Lucas!” a huge smile appears on his face, he starts wiggling furiously (at least as much as his weak tummy muscles will allow), and usually throws in a vigorous double-handed waive.  Oh yeah, and he also does a version of this routine when Victor or Florence arrive, or Nonna and Papa, or Gramma and Aunt Megan, or other friends he hasn’t seen for a while… but needless to say, there’s an extra sparkle in his eye for mom and dad and it makes our hearts melt every time.

With lots of good stuff going on for Lucas lately we’re all excited about what 2011 may bring.  Though we don’t have time to reflect on all the challenging and wonderful things that went down over the past year – from Lucas being diagnosed with Myotubular Myopathy in February to organizing our first public event as parents of a child with disabilities in December – we are grateful to be together with Lucas and for all that our friends and family have done to support us this past year.   And we’re definitely grateful to have kept this blog going as long as we have.  Thanks for reading and continuing to comment.  We’d love to hear your highlights of 2010 and what you’re looking forward to for 2011!

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.

On Monday Burke returned from his retreat in California.  It was a great homecoming with Lucas – the little guy was all smiles when Burke came in and they spent a lot of time reconnecting, with Lucas touching Burke’s beard to make sure it was really him.  Krista’s mom arrived later that day and has been here all week, reading, playing, and taking beautiful fall walks with Lucas.

Lucas is feeling lots better this week, and the pinkness and puffiness around his eyes is almost totally gone.  Maybe because he feels so much better, or maybe because of his expanded audience, he’s been making lots of new facial expressions and sounds.  He’s getting louder and faster with the tongue clicks, and on Tuesday afternoon he developed a “kissy face”, with the bottom lip coming to his front teeth and his cheeks sucking in slightly.  He’s also brought back what we call “badger face” (sucking in his bottom lip), which he was doing slowly earlier this summer.  So badger face is back, but it’s not always slow and deliberate any more.  The video below shows better than we can describe the amazingness of the rapid-fire badger conversation he had with his Gramma.

And finally, just to really wow his audiences, Lucas has been experimenting with combining badger face and vocal sound, which comes shocking close to saying “ma-ma.”  Or sometimes “ma-ma-ma-nananananananaaa.”  Have we mentioned he’s brilliant lately?  We’ve been so wowed that our upstairs neighbors report they can hear us laughing and cheering for Lucas through the ceiling.

It’s not all about work and performance around here, though.  At the end of the day one of Lucas’s greatest skills is still the good ol’ fashioned snuggle.