A pitch for the school fundraiser (Oct. 24)

Lucas writes a fundraising appeal!

The move-a-thon .
What do i like about orca?
Music, Math, Writing wich is what i am doing right now!
Library,PE,Art,
I LOVE my Friends & my Teacher .
Even my Table name, the gaming sheepish sea creatures .
I need donatoins – will you please sponsor me?

Here’s the link

This snappy kid is fundraising for his school Orca K-8, for things like garden class, field trips, playground (which we are working to make accessible!) He wrote this fundraising letter all on his own, and it makes me so happy!- how can you not donate to this? (And another part of my pitch – the picture above of him THRILLED to be on his way to school is from last spring, when he got dressed up to present a video he made with a friend, and support of amazing staff, about how to be a good friend and take into account other people’s needs.) Like I said, how could you not donate?!?

25th October, 2017 This post was written by krista No Comments

A cousin’s hero (Oct. 15)

Lucas’s 11-year old cousin Tya chose to draw and paint a picture of Lucas as part of an assignment at her school to honor one of her heroes. Here’s what she wrote, followed by the amazing picture:

My cousin Lucas is my hero. He’s one of the most inspiring kids I’ve ever meet. Lucas was born with a disease called myotubular myopathy. The disease makes it so his body is disabled. But even though he has the disease he’s still happy and positive, and that’s why he’s my hero.

Lucas is in a wheelchair with stickers on it . He has a tube connected to his neck that connects to a machine. The tube makes it’s so Lucas can breath well*. Without the tube it would be very hard to breath. Lucas is one of the smartest kids I know, the thing about Lucas is if he wants to know about something he studies about it hard. Lucas’s favorite thing to learn about is dinosaurs. He reads and watches so much about dinosaurs. I know nothing about dinosaurs so I always have to ask Lucas about them. Lucas also has really good jokes. Like two months ago we were a my grandma’s celebrating Lucas’ birthday. We were all talking to Lucas and he made a really funny joke. I don’t remember the joke. I just remember it was really funny!

 

* When Tya read her piece to Lucas yesterday he remained quiet the whole time except to exclaim after the part about his vent tube allowing him to breath… “and talk!”

16th October, 2017 This post was written by burke 7 Comments

Transition to Fall (Oct. 2)

How, dear friends, dear children if you read this some day, can I ever sit down and try to sum up our summer and now the transition to school!?!

As of September 6, Ida and Lucas are both going to school – Lucas is in third grade, and Ida is in a part time preschool. It’s been an exciting change, the transition both smoother and harder than we could have predicted.  Although in the past I’ve longed for the break that back-to-school gives me, this fall I was also sad to let our sweet, sweet summer go.

I’m so glad that Lucas kept up his excitement about blogging throughout the summer – it’s an amazing window even for us as his parents into what was most important (or silly) in a day.  And I appreciate that Lucas became our family archivist, since Burke and I didn’t get around to writing much.

And honestly Burke’s and my absence on the blog is a pretty good way to represent our summer. We were busy. Busy because raising two kids keeps us very busy in the summer, especially as Ida grows and gets to be so quick to break something if she sees us paying more attention to a computer than to her. Busy because we traveled an incredible amount (for us, at least) – I think three weekend trips to Whidbey Island, two longer trips to Oregon, and of course our major RV road trip to northern California and back. And we saw so many friends. If I dared try to sum up our summer, it would in a summer of connecting – it was a joy to watch Lucas and Ida connecting with each other in deeper and deeper ways, and then travel allowed us to reconnect with friends in the way that having days instead of hours together permits.

So before I go on to talk about school, let me just say that we have incredible friends and family. Thank you all so much for being so flexible and amazing in finding ways to connect with Lucas or meet his needs and to include us in your lives. Moments that come to mind include a vacation with Dan and Dana and Julian hanging out on Whidbey Island, including an accessible hike and a nonsense song about “pikas everywhere!” (there were definitely no pikas, for the record); another Whidbey trip when Lucas and cousins Tya and Ellody figured out a way to dance together on the porch and swinging bed; Labor Day at the Oregon coast with Eli, Amanda, Pax, Gracie, Alisha, Esteban, Aurelio and Benito, when everyone rented wheels to come out on the beach with Lucas in his borrowed beach wheelchair; a Whidbey Island “camp out” in which Jill, once again, helped Lucas get his wheelchair out in the middle of a field of goats and sheep and squawking geese; Susie and Ilana and Richard and Stef and Ki all learning to speak the nonsense language “vegemalese,” to the absolute delight of Lucas; fourth of July in our backyard with Lucas telling Mike and Carol and AnaLucia all about our RV road trip through the Redwoods; a Whidbey Island adventure out around the bogs with Nonna that led us to witnessing not one but two elegant flocks of circling white pelicans; an outing that Lucas and Ida took with Gramma and a nurse to the Beaverton farmer’s market that involved Lucas and Ida holding a pack of squirmy puppies.  And cousins!  Ida got to have multiple overnights with Ashley, Brandon and her cousins.

This summer Ida’s language really took off – she went from just saying short sentences to engaging in long conversations, making up songs and stories, and regularly asking “how you doin’ Mommy?”  (The other day she asked at a moment I happened to be rushing and nervous about work, so I decided to try to be honest and I told her I was feeling a little bit scared.  “Do you ever feel scared?” I asked as I pushed her in her stroller home from the store.  Without hesitation she nodded and said “I feel scared about porcupines.”  This is the first time we have EVER talked about porcupines, so I had to hold back a huge laugh.  I tried instead to figure out what emotionally intelligent 21st century parenting would do here — I went with thanking her for sharing, telling her we don’t have porcupines in Seattle, and that therefore I can pretty easily commit to keeping her safe from porcupines.  She changed the subject.)

Anyway, there was a day this summer that – like many days – we all came home from some trip to a library or park.  There’s always some chaos in the transition home in which Ida has to entertain herself while we take Lucas’s shoes off, take him out of his chair and get him comfortable on the couch.  Often we need to also do some other medical care or feed him, too, so there’s a period where all the adults are busy, and Ida runs around the house and entertains herself, or tries to help with Lucas’s routines.  But this summer Ida started bringing toys over to Lucas while we do all his care.  And then, there was a point where Lucas started asking her to bring things, and she started doing it.  And then, once she was standing next to him on the couch handing him things, they started talking about the things – toy dinosaurs or Octonaughts or other creatures.  And, as I went about getting tubes and suction machines, I noticed that Lucas was asking her questions, and Ida was answering.  It was sweet and new.  Spoken communication is so rarely smooth for Lucas with anyone other than his closest family and nurses.  I decided not to make a big deal out of it and just let them have their conversation.  But later that evening, we were doing our night time ritual of naming something we’re grateful for, and Lucas remembered.  He said, “I’m grateful that when I asked Ida a question, she answered me!”

So, looking inward at our family, we had a truly incredible summer.  And yet, whenever people asked “how are you doing?,” my real answer was that my heart was filled with the joy of my kids and the heartbreak of the world.  I know I don’t have to list for you the horrors, from one natural disaster after another most recently, but also the very real threats and attacks on immigrants, the explicit and implicit support for white supremacy coming out of the White House, the rise in hate crimes and continued violence against people of color… even as I start to make this list my stomach turns and my throat clenches.  The truth is that this summer also hurt, and when I try to see it all I feel scared – being so close to so much joy, while also worrying about when our kids and so many kids will begin to see the rest, too.  And honestly those moments of looking up and seeing the big picture are fleeting.  The laundry or the suctioning or the book reading or the dish washing or the pretending to have a picnic with Ida’s dolls requires all of our attention.  And I am grateful for that, too.

2nd October, 2017 This post was written by krista 1 Comment

 

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