Lucas Camilo

This past weekend we made our second trek to Gramma’s house, just outside Portland.  It was a bit of a harrowing journey — three and a half hours down I-5 on a dark, stormy night.  We hadn’t really counted on how different it would be to drive with Lucas in the dark.  It’s pretty critical to be able to see him, since he loses his ability to vocalize when he’s having trouble breathing.  We actually considered pulling over in Olympia and sleeping in a motel at the side of the highway, but we powered through (in part because Lucas fell asleep, and he usually needs less suctioning then) and made it to Gramma’s around 10 pm — very late night for us.

Lucas was really happy to be at Gramma’s house.  She has his favorite version of the book “There Was an Old Lady Who Swallowed a Fly,” and he demanded that she read it probably 50 times over the three days we were there.  In fact, he was loved it so much he protested our trip to the zoo.  He was happy about seeing the penguins for about 60 seconds, and then promptly demanded we go home to read the book.  All weekend long Gramma was amazingly patient, reading it over and over, and even managing to get a few other books read in between.

Besides wanting to visit Gramma, we went to Portland to catch up with family and friends and new babies.  We got to see Krista’s old friend Jennie and her baby (now toddler) Oscar, then Krista’s cousin Erica and her little baby, Berlin.  Lucas used to be skeptical of babies, but he seemed fairly interested in meeting the little ones.  He was especially impressed with Oscar, since Oscar immediately took to Caspar Babypants (Lucas’s favorite band).  Lucas also got some time with Krista’s Aunt Penny and Uncle Steve.  Steve is a salmon fisherman, so he and Lucas had a lot to talk about: fry, smolt, and favorite salmon species, and then the question of whether or not steelhead are salmon or trout…  And then on Saturday morning we took Lucas to the farmer’s market, and he was excited about picking out some pumpkins for a little while.  But then, shortly after taking the cute pictures, he had another meltdown and demanded we get back to Gramma’s house immediately.

On Saturday night there was a CISPES event, with a report back from a women who went on the medical brigade to El Salvador this summer.  We were excited to go to hear the report and connect with a lot of friends, but nervous because we have never taken Lucas out to something that started at 8 pm (ie bed time).  Fortunately the event started with two Salvadoran musicians playing revolutionary folk music, and Lucas LOVED it.  He even got into shouting and pumping his fist for the “Dale!” part of “Sombrero Azul,” which is the unofficial anthem of the Salvadoran left.  Needless to say, we were beaming with pride.

He also held out (thanks to the iPad) through almost the whole presentation.  It turns out that in the right position, with the right acoustics, Lucas can actually get loud enough to be a bit disruptive during an otherwise quiet presentation, so for the first time ever we found ourselves asking Lucas to be quiet.  At one point Lucas passed gas, and, thanks to our family game of naming all bodily functions, Lucas shouted out “you tooted!” (He still refers to himself as “you.”)  Of course Lucas is hard to understand, so no one else caught the joke, but we loved it.  And more importantly, it was fantastic to be able to take Lucas out to an event and feel inspired by something that is so close to our hearts.

On our way out of Portland on Sunday morning we stopped to meet the Machinchi family, including Javad.  Krista had met them at the MTM family conference last summer, but it was the first time for Burke and Lucas.  Lucas immediately loved Shannon, mimicking all her great hand gestures. (Ask Lucas about Shannon and he’ll show you the sign he made up for her.)  And although Lucas and Javad are far apart in age, they share share a passion for i-pads.  We pointed out to Lucas other things they have in common (Javad definitely studied our suction technique when Lucas’s machine came on), but Lucas was most excited by Javad’s science apps.  When we got home and showed Lucas this picture of him and Javad, he exclaimed “you met Javad!”  And then, “you saw Javad’s i-pad!”  Next summer there will be another MTM family conference, so we’re excited about the opportunity not just to hang out with Javad more, but lots more MTM kids and families.