Lucas Camilo

Lots has happened in the last week and a half and we’re excited to finally get a chance to report and reflect.

First, we must acknowledge the significant victory of last week’s ruling by the Supreme Court to uphold most of the major aspects of the Affordable Care Act.  When it passed we wrote that ACA didn’t go far enough – and we still believe that to be true.  But we also understand just how much Lucas and many others like him have already benefited from the changes brought on by health care reform, and how devastating it would have been to see these things reversed.  We’re talking about the fact that the ACA makes it illegal for insurance companies to deny coverage to children with pre-existing conditions (something that will eventually be extended to others), as well as the elimination of life-time insurance caps.   The law also benefits people with disabilities by expanding coverage for mental health and home/community-based services, and by expanding access to Medicaid.  Indeed, many people are sleeping better following the Supreme Court decision, even as we must continue the fight for deeper reform.

On the same day as the health care decision was announced we signed the paperwork on the purchase of a used wheelchair van for Lucas.  Needless to say, buying a mobility vehicle is very different than getting a normal car, if only for the fact that the factory conversion basically doubles the price of an average mini-van.  In the end, the process was much easier than we would have thought, in part because we found a really solid used van — via a special needs list-serve — that has only 41,000 miles on it.  These vehicles are very specialized and this one seems to have been made for Lucas.  It has an easy fold-out ramp (rather than the more cumbersome power-lift which he’ll likely need later in life) and self-retracting straps that cinch his wheelchair in place.  It wouldn’t work for an adult but it’s perfect for Lucas and we’re grateful to the family for selling it at a reasonable price and passing it on in good condition.  We also know other families who have spent months raising money and struggling to find financing to be able to purchase a mobility vehicle.  So we’re feeling extremely lucky to have been able to put a down-payment on the van and secure a low-interest loan from our credit union.  And best of all… Lucas loves it!  He can now face forward and see out the front, and we don’t have to maneuver him awkwardly into a undersized car seat every time we go out.  Big progress!

Just when we thought the week couldn’t get any more momentous suddenly we found ourselves packing up for the first ever Burke-Krista trip without Lucas.  Since he was born Lucas had never spent more than 8 hours of daylight without at least one of his parents at his side.  But in May we secured coverage for respite care, opening the way for us to take an out-of-town trip.  Four different nurses spent time with Lucas over the course of about 48 hours.  Burke’s parents also played a huge role, hanging out with Lucas, bringing Bruno to play fetch, reading countless books, countless times.  They also sent text messages and called to give frequent updates from the home front.  Perhaps surprisingly, we weren’t all that nervous, knowing that Lucas was in good hands… and that, not as surprisingly, Lucas didn’t seem to miss us that much.  According to one nurse, “I hate to say this but he didn’t mention you all day long and seemed completely content.”  Our feelings weren’t hurt in the least; to the contrary, we were extremely grateful for competent caregivers and tireless grandparents, confident that Lucas was in good hands the entire time we were gone.

Oh, and did we mention it was an amazing trip?  Three beautiful hikes in the North Cascades, returning to our northwest roots of spectacular mountains, rivers and waterfalls (check out a few pictures here.)  Our recent good fortunes landed us in a cozy little cabin on the banks of the Skykomish river in the town of Index — courtesy of our generous neighbors Barbara and Sara.  Thanks to everyone for making it possible!

Finally, upon return we linked up with our old friends Daniella and Gabe, along with their son Rafi, who stayed in our basement until leaving to go back to Oakland yesterday.  Lucas and Rafi hadn’t seen each other for over a year, and their second meeting didn’t go quite as well as their first (check out this funny video of the boys in June 2010) as Rafi’s high energy was tough for a guarded Lucas to handle.  But this time they hit it off, as the photos below demonstrate.  From kisses to brushing their teeth together, Rafi and Lucas — despite being about as different as a couple 2-year olds could be — became friends over the four days they were together.  Daniella and Gabe were also amazing with Lucas, patiently figuring out which book he was asking for and reading them over and over again.  And to top it all off, a few friends joined us for a fun 4th of July barbecue on Wednesday.  What a week!!