Lucas Camilo

Lucas had some more ups and downs last week, but thankfully mostly leading toward full recovery. So on Monday Lucas went back to school for the first time in two weeks!  Burke was in DC for 5 days, which was challenging at times but also filled with some fun new games.  Lucas got a new headrest on his wheelchair, which allows him to actually look forward and not stare at the sky/ceiling when he’s out and about.  He seemed very happy with the change, so much so that he broke with routine (and he loves routine) and asked to be wheeled around the house when we got home from our walk.  In fact, he said “run around!”  It was so relieving to see him happy and comfortable, so of course I more than willingly ran and pushed, then pulled on the brakes fast in the kitchen.  And Lucas laughed and gave me kisses and said “run around, again!”  We then added a spin move, which Alice caught on video:

We could not be here, and certainly not feeling as semi-whole as we do, without so much accompaniment, love, support, help, and more love.  The incident that landed Lucas in the hospital was pretty intense so we needed all the support we could get, during and in the aftermath.  Keeping in mind our post on gratitude a few weeks back, here is an incomplete list of the people we want to thank.

Thank you, thank you, thank you to Erin and all the paramedics with Medic One, the Seattle firefighters on Engines 13 and 30, and anyone else who crowded around Lucas in our living room that Saturday afternoon and helped keep his heart beating.  We are grateful beyond the scope of language.

Thank you to our families.   We were both initially out of cell phone range, so thanks to our moms for their diligent work to find us quickly and keep us updated.  We know that being witness to Lucas’s suffering was very traumatic for them, and yet they found ways to be helpful in the days that followed.

Thank you to everyone who visited us in the hospital.  Showing up, especially in the first couple days when there was nothing to say that would make it any better, was probably incredibly hard.  Thank you, thank you.  Our families were there with us immediately.  And then Eli, who drove Burke to the hospital from the mountains, and Heidi, Isham, Olivia, Evan, Aaron, Aimee, Adam, Tyler, and Whitney, who showed up with food and shampoo and hugs.  And then Susie, Emi and Azi, Perla, Alex, Margo & family, others…

Thank you to everyone who called, wrote, texted, commented on the blog or facebook, prayed, etc.  We felt the love.

Thank you to the nurses.  We had amazing nurses at Children’s who were gentle and kind to Lucas and the two of us.  They did the things good nurses should: stacked the routine checks and meds in the night so they’d only disturb Lucas (and us) a couple times in the night; asked us how we did things for Lucas at home, then actually did what we said; and helped us get answers or doctors quickly when we had concerns.  They even noted in their charts that Lucas likes a washcloth in his hand to fall asleep.  One time we were out of the room when he fell asleep, and we came back to find wash clothes in both his hands.

Thank you to the doctors, especially our main attending doctor, Amanda Streigel.  She not only went out of her way to keep us informed, but also brought Lucas a penguin book the day he started to wake up.  She also divulged when she didn’t think the answers we were getting were the right ones, which is always incredibly useful information.  And thanks to Whitney, an ER doctor and friend who performed CPR when Lucas arrived at the hospital. (“Thanks” doesn’t seem like enough for any of the people who kept Lucas alive that afternoon… but there it is.)  And our friend Joel who also works at Children’s and who stopped by and checked with us during the days following the incident.

Thanks to Lucas’s cousins Madden, Tya, and Ella for the get-well art that hung on his hospital walls.  And for the dance party at our house the morning after we got home from the hospital.  Lucas was so happy to see them, and they made our house feel especially festive after four days in the hospital.  And extra thanks to Ashley for coming by so many times.

Thanks to Gramma Susan and Megan for cooking a lot of the Thanksgiving dinner.

Thanks to Kevin and the CCC staff for major food deliveries right after the Thanksgiving leftovers were gone.

Thanks to all the other MTM families, and families with kiddos with disabilities, who reached out to us.

And over the past week, as the acuity of it all has passed, it’s been wonderful to keep getting visits, many still involving food.  Especially soup.  And since Burke has had to be in Washington DC for the past five days for work, those visits have felt especially relieving. Thanks Stef & Mackenzie, Dan & Dana.  And thanks to Auntie Alice for driving up from Portland.

Lucas meets medic Erin on Thanksgiving, five days after they met for the first time.