Lucas Camilo

Nonna, Papa, aunt Ashley, and cousins Madden, Tya and Ellody pulled out of town on Sunday night after a whirlwind 5-day visit with us in Washington DC.  For Lucas it meant lots more people around to hold and play with him, and in general he rose to the occasion.  His grandparents and aunt Ashley were especially impressed by how much progress he has made since their previous visits, as he showed off new stunts like his peanut-bouncing (see video from July 12), ability to swing toys around overhead, and the increased use of his voice.  It also made everyone happy to see Lucas smile and make other funny faces, and at the end of the day he clearly connected with Burke’s family more than ever before… which for us was wonderful and moving to witness.  At certain moments you couldn’t help but notice and extra twinkle in his eye or wiggle in his arms, which is Lucas’s way of showing just how pleased he is.

As for the three little ones (Madden is 5 years old and the twins about to turn 4) they brought a little less patience but just as much passion when it came to Lucas.  Madden especially showed a real curiosity and thoughtfulness – asking about the vent tube, or his feeding set-up, or the reasons behind suctioning.  Both at home in Seattle and while here in DC she talks about hoping that “Lucas gets better,” and to see that kind of tenderness from a child who hasn’t yet started kindergarten is really amazing.  On the other hand, we wondered to ourselves about how to talk with her and explain that Lucas is who he is, that he won’t necessarily “get better” in the way that she’s probably imagining; he’ll grow up and continue to develop in his own way, but he won’t end up being like the other kids she knows.  It’s a hard thing to explain to a child, but when we imagine having that conversation (with children and bigger people alike) we know we’ll keep highlighting the things Lucas IS able to do as opposed to focusing on what his disease prevents him from doing.

Over the course of the family’s visit we challenged the heat a couple times and got everyone out for some small adventures.  Lucas’s second visit to the zoo wasn’t nearly as triumphant as his first visit with Gramma Susan the week before, and it showed some of his current limitations.  For example, he doesn’t like to go out in the middle of the day when it’s 95 degrees and humid… but then again, who does?  He did a lot better on a cooler, cloudy day when we walked up to a playground with the whole gang.  There, he got out of his stroller, roamed around with Burke, and checked out his cousins zipping down the slide.   Later, Papa and Krista helped him bounce on a rocking horse, the first time he’s been able to actually play on one of the big toys in the playground.  He also did great when we brought him outside early Sunday morning and set up under the tree in the front yard to watch the leaves and bugs overhead.  And, he enjoyed having Madden spend one night with us.  In the morning the two of them laid on the floor sucking their respective thumbs and sharing rubs on Madden’s special “Mimi.”  Finally, as the family was about to head back to Seattle we managed to get everyone sitting together on the couch just long enough to snap this photo: