Lucas Camilo

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.