Lucas Camilo

As mentioned in a previous post, we recently bought a house.  Though I remain ambivalent about home ownership, I’m excited that we get to stay in our neighborhood (just a block away from the house we’ve been renting!), and its certainly a relief to finally have found a relatively wheelchair accessible place with multiple bedrooms on the first floor.  We were also fortunate to have the support of my parents and Krista’s mom which made a big difference given that there were multiple bidders and the house went for significantly more than the asking price.  Indeed, some of my ambivalence around buying a house is due to the current state of the housing market in Seattle, and the fact that so many people – especially people of color in the south part of the city – are being forced out by ballooning prices. I feel extremely privileged to be able to buy such a house in the center of the city I grew up in, and the experience has encouraged Krista and I to increase our giving to organizations that are working towards affordable housing and against displacement and gentrification in Seattle.

All that being said, the main shortcoming of the new house is that unlike our current home there is no way to easily enter it in a wheelchair.  The only way we could get Lucas in at first was to hoist up his chair and carry it up the 6 steps in the back, not an easy task.  So after multiple offers from friends and colleagues to build us a ramp, we ended up commissioning our neighbor Bruce (a raft guide and off-season handyman) to do it.  And as you can see from the pictures below, he’s doing a great job.  We’re considering it a short or medium term solution as we figure out how to best utilize the back porch and yard.  So if you have any ideas…

Meanwhile, on Saturday morning Lucas woke up with blood in his mouth and we soon figured out that another tooth was gone.  For those of you counting out there, that’s the 4th tooth Lucas has lost, meaning he’s certainly ahead of the game for a 5 year old (losing teeth early is a characteristic of kids with myotubular myopathy).  The funny thing about this one was that he literally lost the tooth.  It was nowhere to be seen in his mouth and after fishing around for a while we gave up and went for a walk.  Later that day he and Nonna wrote a note to the tooth fairy explaining the conundrum, and she was kind enough to bring him a cool little ladybug figurine despite the fact that he had no tooth to exchange.

(Update: this morning as Lucas was waking up Krista found a nice, white baby tooth lying on the bed next to his head.  Which is to say that he’s had it floating around in his mouth for the past two days…)

The final bit of news is that Lucas made the front page of the Sunday Seattle Times!  You may recall that a little over a year ago our family was featured in the newspaper as having already benefited from the Affordable Care Act, among other stories of people in Washington state who would be affected by the implementation of the ACA.  Well, the Times decided to do a “one-year-later” update, and as part of the series sent a photographer to grab some shots of Lucas.  On Sunday, we got the paper and found a huge picture of Lucas coming down off the school bus lift, along with his nurse Laurel, the bus driver Mary, and me.  Lucas thought it was pretty cool.

The article is worth reading, despite its shortcomings (including the fact that the Times could somehow only find white people who had been affected by the ACA.)   Lucas is clearly the winner, having benefited from the elimination of exclusions for pre-existing conditions and lifetime caps, and having had his “child-only” plan through Regence go down in price.  Yet the reporter failed to include my quote about how the whole experience has convinced us that a single payer health care system is the only way to go (or maybe he did include it but the ultra-conservative editors at the Times considered it a nod to socialism and took it out).  Indeed, the fact that we require three separate health plans to cover all of Lucas’s needs is ridiculous, and not the fault of the ACA but rather an insurer-based health care system full of complex bureaucracy. The other personal stories show additional challenges people have faced (even as millions have benefited from coverage, improved coverage and/or lower rates). The biggest problems here in Washington seem to involve administrative complications of the new system – which means people spend tons of time getting the coverage they need – and the greed of the insurance companies.  For example, the ACA sets a maximum deductible.  What do the insurers do?  They jack up the deductibles in all their plans to be close to or at the maximum.  For many working people who don’t qualify for Medicaid or subsidies within the exchange, these sorts of changes make it that much harder. Alas, the story of the ACA is a mixed bag, and our conclusion (you won’t be surprised) is that we urgently need to keep pressuring politicians to move towards a single-payer system.  Given what happened in the elections last week that won’t be happening anytime soon, but that doesn’t mean we shouldn’t fight.

And after all that… here are some shots of the new, almost finished, ramp: