Lucas Camilo

Did we mention Ida turned TWO YEARS OLD? She is such a big kid now, with big likes (books, pasta, Duck and Moose pajamas) and dislikes (vegetables on most days) and a big swagger and parade wave. She has so much amazing personality, so we thought we’d take this marker to give a snapshot of the amazing joy that is Ida right now.

She has been talking for a while, but she is now piecing together more and more things to say. Some of my favorite conversations recently include:

Me: Do you want blueberries in your oatmeal?

Ida: Blueberries in the MOUF! (ie. straight into my mouth)

Me: Its time for a nap – can you please lie down?

Ida: UPSTAIRS, MOMMY MILK! UPSTAIRS, MOMMY MILK! PLEEEEAAASE!!

Me: Do you want to wear the cat shirt or the bird shirt?

Ida: Cat shirt! No cat shirt! Bird shirt! No bird shirt! Cat shirt! No cat shirt! NO BIRD SHIRT!!!!

There is also a lot of directing of where everyone should go, including her pointing at a spot up on a chair or couch and saying definitively “Ida right THERE!” Today before her nap I tried to lie down on the bed with her to read a book in the exact spot she pointed to. Ida didn’t like that I was lying down, so she instructed “Mommy sit up, read.”

Did I mention she is definitive?

Ida is also really into songs. She’ll sing songs, or at least parts of songs, all on her own – Ba Ba Black Sheep, the ABCs, and a number of songs from music class. For her birthday party our friend Julian (who is a rock start at 2 ½) led a sing-along while strumming his ukulele. When he started singing Ba Ba Black Sheep Ida’s face lit up like a teenager at their first rock show. Then Julian took it up several notches by leading us in This Land is Your Land and then, at his suggestion, We Shall Overcome. We can get you his contact information if you want to book him.

And she loves reading books. It’s no longer just a flipping through pages, but she really goes through and studies the books. She’s memorizing some, like Eric Carle’s Baby Bear, Baby Bear (also one of Lucas’s old favorites). And she reads books by combining what she remembers with what she sees in the pictures. This morning after music class she read a Sandra Boyton book to a younger kid in her class. Pointing at the pictures and turning the pages, she read to him “One dog, arf. Twoooooo dogs, woof woof! One cat, meeeee-ow. One donkey, hee-haw, hee-haw.” It is almost unbearably cute.

And Ida is developing color preferences. She picks out things that are pink and purple more often than not when she has a choice, which is challenging me. I’m working to find the balance between protecting her from some of the limitations of girl-socialization, while also giving her some self-determination around clothes, balloons, the shaker instruments she chooses at music class, etc. But her wardrobe is still varied, with many of Lucas’s old clothes and a variety of other hand-me-downs.  And clearly I’ve done quite a bit of curating of her clothes options, since there are days that she and I manage to leave the house in a similar combination of navy blues and earth tones. But I have a feeling those days are coming to an end.

Ida is still obsessed with Lucas. She studies everything he does and everything we do for him, and she tries her best to be part of all of it. She knows how to put on a stethoscope and check heart and belly sounds. She tries to predict where we are in his routine morning routine so she can “help” us with his tube feeding or his brace. A couple times now she has gone to his suction machine, loaded up the right catheter for a trach suction, and then reached up and pulled his vent off him for a trach suction. She even knows how the tubes for feeding work and tries her best to find the hole in her tummy to put the food in.

It is both scary and amazing to see how detailed her observations are. Fortunately Lucas is incredibly patient. She’s even accidentally pulled his trach out. I tried to explain to her – and told him he could tell her, too – that it hurts Lucas when she does that. He paused and then just said “that time it didn’t feel so bad.”  Even when she does something dangerous, we try to remember that she is just curious. The other day when we were all looking the other way, she went over to Lucas’s extra vent and grabbed the circuit. I glanced over just as she held the end up to the exact spot on her throat where a trach would go.

As I write this she is gathering up her creatures — stuffed animals of all stripes that she ties onto a “leash” and drags around the house on walks.  Earlier today she squealed with delight and came running out of the bathroom delighted that “piggy in poddy!”  I went in prepared to save a drowning stuffed pig, but instead she had placed it in her (dry and generally unused) toddler potty.  We celebrated the pig’s great job by getting a square of toilet paper.  Ida was thrilled to “wipe” the pig and flush the toilet paper down the big toilet.  There are so many things to be excited about when you’re two!

Here are a few videos of her cuteness.  Enjoy!

A couple times now I’ve started a post about this scary, challenging political moment we’re living in, only to be overwhelmed. There’s so many horrific things happening — and an inspiring level of creative resistance in response — that its hard to know where to start. But there are two aspects of the new administration’s policies and plans that feel specifically relevant to Lucas and our family: the repeal of the Affordable Care Act and the nomination of Betsy DeVos as education secretary. The battle over DeVos will be over soon as the vote on her confirmation is expected next week (and there’s still a chance to stop her from being confirmed! Call your Senators, especially if your states with Republican Senators who could be convinced to vote against her like Ohio, Pennsylvania, Nevada, Kansas… the list is constantly changing). Perhaps most troubling for our family is her lack of knowledge and potential for undermining the IDEA Act, the law which allows for kids like Lucas to have access to quality public education. You can read more about that here. Meanwhile, the ACA battle looks to be more drawn out… so I’ll get back to writing about that in the coming days.

The other night as we did our before-bed gratitude Lucas said, without hesitation, “I’m grateful for all the people fighting for justice.” Like a lot of kids out there, he has a sense that something unprecedented is going on in the world… and he’s clear what side he’s on.

Life goes on, and despite the chaotic state of the world, Lucas has been doing great lately. That blog post from December where we talked about his often negative attitude — reluctant to go out of the house and mostly just wanting to do stuff “by myself”– well, that seems like the distant past. These days Lucas is much more open to new adventures and engaged with projects at home and at school. We’re not sure what flipped (better sleep? just a stage he was going through?) but whatever it is, its made everything a lot more enjoyable around our house. Oh yeah, and Ida is hilarious and wonderful too, and trying to be like her big brother more everyday. Among other things she loves animals, dinosaurs, reading books, rocking out to music, and being silly and a little stubborn (or a lot, depending on the day).

About halfway there! 13 down 14 to go.

But the title of this blog post promises something about libraries! So… as we mentioned in a previous blog post, we’re on a quest to visit all of Seattle’s 27 libraries. Lucas has always loved the library, and given some of the limitations on what we can and can’t do with Lucas, the public library is about as good as it gets: free, accessible, educational, and full of possibilities. We have 3 libraries within a mile or 2 of our house (Columbia City, Beacon Hill and Douglas Truth) and those have been our standbys for years. Beacon Hill is our most frequented library and probably will always be Lucas’s favorite (despite what Charles Mudade of the Stranger has to say about it), especially because there are two, worn-down plastic dinosaurs that hide among the stacks. Seattle’s downtown library is also a pretty amazing place, with multiple floors beyond the children’s section, an amazing view from the top, and a section that consists entirely of red walls and ceilings that Lucas loves to roll through.

So we had a handful of libraries under our belt when we set out on our quest, but in the last month and a half we’ve been to a half dozen new libraries throughout Seattle. Among our new favorites is the Southwest Branch on the border of West Seattle and White Center. Lucas immediately commented on the high ceilings and cool decorations, and the expansive kids section not only had giant stuffed animals but also a great selection of puzzles, blocks, toys for toddlers… and dinosaurs! The Chinatown/International District library is a small treasure with lots of different languages and cultural diversity featured, and a solid selection of kids books.  People were really nice there, too. Most recently we visited the Greenwood library (see picture at right), the farthest north we’ve ventured, and were impressed with its kids music and audio book selection, not to mention the abundance of big windows and natural light. Lucas made quite a haul of books, cds and dvds, as you can see.

Given that we also check out a lot of eBooks and digital audiobooks through the Seattle Public Library website, I suspect we’re one of the library’s more prolific users. As we begin to fight back against a renewed push towards privatization, deregulation, budget cuts, and efforts to undermine public institutions, supporting things like the library is one small way of resistance. Look out for more library tails as we continue on our quest to visit all 27 Seattle libraries!

Scenes from the Southwest branch

Lucas wrote a short blog post this morning about his experience at the Womxn’s March in Seattle yesterday:

yesterday we went to the march
it was about trump.
it was the biggest march ever!
there were 120,000 peeple!
my favorote sighn was trumps a chump he can kiss my rump .
it was fun.

Lucas came up with the slogan on the sign himself when I asked him, “What do you want to say to Trump?” Krista and I added the second part about respecting people with disabilities — not only has Trump mocked a reporter with disabilities and shown disrespect on other occasions, but far more ominously, his Administration removed all mentions of disabilities from the main sections of WhiteHouse.gov immediately after his swearing in on Friday.

We almost didn’t make it to the march on Saturday. We knew it was going to be huge and were worried about whether it was possible to include Lucas in a way that was safe (allowing an easy escape from the hoards) and not too overwhelming to make him want to go home after 2 minutes. So we decided to arrive early and wait at the first access point 1/2 mile into the march, which ended up working great. We were able to watch tens of thousands of people walk by with beautiful, creative signs (so many people, in fact, that we never got to meet up with many friends), and then jump in for 5 blocks of marching before exiting the march at the light rail stop in the International District. All that took two hours and Lucas was more than ready to go home at that point. But he seemed to enjoy the whole thing and was telling stories about it for the rest of the day.

For us it was triumphant to be part of what people are calling the largest day of protest ever in US history. We know there is much to be done to turn the energy from the hundreds of Women’s Marches around the country into a true resistance movement, and we plan to be involved as much as possible (with Lucas too, whenever he’s up for it.)

There is a lot more to say about what the potential policies of this Trump Administration and what we can do to thwart them. But we’ll save that for another blog post, in particular one area that you’ve heard us talk a lot about already: the health care system, the Affordable Care Act, and Medicaid.  This battle is already upon us and we’re going to have to do everything in our power to stop Trump from dismantling a system that has benefited millions of people like Lucas.

The struggle continues.

We don’t always get around to sending around Christmas cards so here’s a picture us our family with “Santa.”  Happy holidays! We hope that you and yours are enjoying a restful break and celebrating whatever special winter traditions you have. For us, its enjoying good meals and special time with family on Christmas eve and day — including Krista’s mom (visiting from Oregon), my parents, Aunt Ashley, Uncle Brandon and “the cousins.”

With Lucas out of school for two weeks — and no plans to leave town — it can be a challenge to find interesting things to do every day.  I’m sure that’s true for lots of parents of young kids, but we are faced with a few additional hurdles: first, not every event or activity you look up in the “Fun things to do in Seattle with kids” calendar is wheelchair friendly (in fact, many of the ones that are listed as “accessible” still don’t work for Lucas for various reasons); and second, Lucas is going through a phase where he says “NO!” to a lot of things.

The latter is perhaps typical of a kid his age asserting independence, but it plays out at times in especially frustrating ways for us, and for Lucas. Sometimes Krista, Ida and I just need to get outside and certainly can’t leave him at home by himself. Sometimes we want to do a fun activity together with Lucas, like playing a game or doing a puzzle, and he’s having none of it. Sometimes Lucas just needs some space but he can’t just escape to another room and be by himself  — his muscle condition makes it necessary for us to position him and whatever books or device in a way that he can access it, and when something falls or gets moved so its not quite right he needs us to come back and re-position everything. Sometimes Lucas just wants to watch an episode of Dinosaur Train or do an app by himself on the iPad. Krista and I pushing him to play in a way he doesn’t want to can enrage him and even lead to tears; Lucas telling us that he just wants to be alone with his iPad — even when he’s already had too much screen time that day — can lead to frustration and hurt feelings. It’s hard.

Meanwhile, there are times when we do convince him to go out and do something adventurous… and it leads to major disappointment because the thing in question just can’t be made fun for Lucas, in all his physical limitations. Or we line up a play date with a classmate and then can’t figure out a way for Lucas and his friend to enjoy any activities together. We know that sometimes we try too hard, and maybe that makes it worse. We just want our kid to be able to partake in at least a few of the typical things that children love to do.

But there’s an upshot: when the stars align and we figure out something that works, it can be glorious. The feeling when Lucas exclaims “that was fun!” on the way home from an outing, or says, “Daddy, we’re having a good day, aren’t we?”, or recounts with excitement something we did together during our “gratitudes” before he falls asleep.. there’s nothing else in the world quite like it. Krista and I hug in exhaustion at the end of some of these days and remind ourselves, in our Lucas voice, “we’re doing a pretty good job, aren’t we?” It’s a feeling of relief. Of satisfaction. Of love.

A few recent snapshots from the holiday season:

— A trip to see the reindeer at a nursery in north Seattle. On a cold, almost snowy morning we made our way to Swanson’s nursery in Ballard to see a pair of reindeer that turned out to be Dasher and Blitzen. Since our kids are both early-risers we often start scrambling for things to do by 7:30 or 8 AM on weekends, and needless to say there’s not much to be had. But the reindeer were on display starting at 9 AM, and we were the first  there to see them. Lucas isn’t as excited about animals as he used to be, but he was thrilled by the reindeer, and we wandered from one side of the cage to another for nearly an hour in the cold watching them eat from different angles. Eventually we got some pictures with a wooden Santa and a giant Apatosaurus shrubbery, but it was Dasher and Blitzen we kept coming back to.

— A trip to Rite Aid on a lazy Sunday morning. Lucas agreed to head to a new cafe by the Mt. Baker light rail station one Sunday a couple weeks ago, and the open layout and lack of other clientele made it a great space for Ida to run around while Lucas ripped through all the books they had sitting on a shelf by the half & half. Once they got bored we walked down the street to Rite Aid to pick up some eye drops and a few other odds and ends. We ended up staying for an hour, walking up and down the isles trying on silly hats while Ida loaded up a baby shopping cart (and we unloaded it every 5 minutes). Lucas was totally into it, cracking up at all the funny games we came up with using random objects that we had no plans to buy. It wasn’t until Ida spilled a potted plant in her lap that the staff even took notice (or perhaps they were letting us off the hook because Lucas was in a wheelchair.)

— Singing carols in Columbia City with our family choir. For the second year in a row we joined the Columbia City Family Choir (which we sing with most every Tuesday) for some caroling at the annual holiday “pole lighting.” Lucas got bundled up, the hard rain held off, and we hung around until the end, at which point the crowd marched off on an alternate route from the previous year — through the parking lot instead of down the park steps — so that Lucas and our family could join.

— Our first viewing of the Nutcracker, which we brought Krista’s mom to as a Christmas present. It started off a little rough, perhaps unsurprisingly. Traffic everywhere, pouring rain, and tough to find parking near the venue; seats that accommodated a wheelchair but didn’t actually allow Lucas to see what was going on; and ushers that weren’t sympathetic enough to a kid with a disability — or didn’t have the authority — to find us a better seat. So 15 minutes in to the performance he said “Daddy!” I leaned over. “I want to go home.” Given the amount we’d paid for the tickets and the trouble we’d taken to get there we weren’t going to give up that easy. We adjusted his chair and moved him around enough to maybe get him in a better visual position. But it was still difficult and he still wanted to go home.

So ten minutes before the intermission I wheeled him back to the lobby, got a beer before the hoards arrived, and took stock of the situation. On one side near a concession stand was a good sized flat screen TV. The music of the orchestra was playing in the foyer (which Lucas observed immediately) and once we rolled up to the TV Lucas started asking questions: who’s that, what’s going on? He could see! And he was interested! After the intermission ended Lucas and I stayed in the lobby while Krista and her mom went back to the seats. I grabbed some coffee and we sidled up to the flat screen TV. I had the Nutcracker program, and not knowing much of the story myself, used it to explain what was going on in Act II to Lucas. And he loved it! He started waving his hands around (“like the dancers!” he told me) and making up Runny Babbit names for the characters (“Drudop” for Dewdrop, and the “Flugar Shum Perry” for the Sugar Plum Perry.) As we sat there — doing periodic mouth suctions as fancy people passed us on the way to the bathroom — I couldn’t help but smile. When I was Lucas’s age I wasn’t very into putting on nice clothes and going to the ballet (and let’s be honest, I’m still not today)… so actually this scene was about as good of a time as I could have imagined.

There have been other fun and funny moments over the last month as well – Lucas hanging out in his wheelchair at the toddler gym, playing games on his tablet while Ida cruises around on all sorts of plastic mobiles; some great walks to the lake, and many, many trips to various libraries around the city (side note: we’re on a mission to visit all 27 libraries in Seattle over the next year– we’re about a third of the way there); a trip to the Science Center, Lucas and Krista checking out an amazing 45 minute IMax underwater adventure film while Ida and I explored the butterfly room; a successful play date at a friend’s house; and the night we all went out to get a Christmas tree and stayed up late, after Ida had fallen asleep, putting up dinosaur ornaments. Small but precious moments.

So much happens every day in our lives that its hard to figure out when to sit down and blog. And then, when we do, its really hard to know which part of the past five or six weeks to talk about.  I hate that trying to give an overview makes the blog sound a little like a sappy year-in-review Christmas letter… We’re all doing just grand, and here are the parts we want to show off.  We’ll get into the messy weeds of our life in the next blog post, I’m sure.  For now, here’s the photo-album-ish picture of our family’s past month and a half.

Lucas’s growth right now mostly involves him getting deeper and deeper into whatever he’s already into. He has some new dinosaur books – a series of fictitious stories called Dinosaur World – that he has read literally a dozen times, and listened to more than that as audiobooks. Lately he has been combining his love of speaking in code (i.e. made up languages like “Runny Babbit,” based on the Shel Silverstein book), inside family jokes, puns, and knock-knock jokes. I would give an example, but most of his jokes really only make sense to Burke and me.  I wish making friends was easier for Lucas, but since he seems so absolutely delighted with making just the two of us laugh, its hard to complain.

This fall he often wants to do things by himself, which of course is incredibly challenging given his disability. So as I write this he is digging up virtual fossils on his Surface (Microsoft tablet) by himself. Burke and I grapple with how much we should limit his screen time given how few other “doing things by myself” options he has. But at this very moment I mostly just appreciate the nerds out there who wrote the code for this and every other dinosaur app.

Ida continues to get better at walking, though she is also very content to sit next to a pile of books and “read” for long, long stretches of time. Recently she’s shifted from babble reading to actually saying the names of things she sees in the books – watching her read to herself and point and say “bunny” is incredibly cute.  In fact, her language has taken off in the past couple months, and recently she started speaking much more in the command form. She first learned to say “COME BRUNO!” to Nonna’s dog. Then she tried it on her stuffed animals (which she pulls around the house on leashes), and then on our neighbor’s cat. Watching Ida yell “COME WATSON!!!” to an indifferent cat lying on the sidewalk was also about as cute as it gets. And of course she also now speaks to us in command form. Dinner usually ends with an abrupt, “ALL DONE! BIB OFF! DOWN!!!” We’ve taught her to say please, and she knows just how to smile and lilt her “peeeaaaasssse?!?” so as to make whatever else she’s just demanded sound pretty sweet.

I’ll let Burke tell you about his new job more in another blog post. For now, I’ll just quote Lucas, during Burke’s recent four-day work trip to Washington DC. “I’m glad Daddy won’t be going away for work any more.” He may be slightly overstating the local-ness of Burke’s new job (Development Director for the Social Justice Fund Northwest), but it is good news for all of us that Burke will be working for an organization based in Seattle. And I am incredibly proud that he’ll be working for such an awesome, progressive organization supporting the best of the best in northwest grassroots organizing. And I will say that Burke never asks for ANYTHING for his birthday, or Christmas, or solstice, or fathers’ day. So if you’ve ever wished you could get Burke something, you can give to SJF. Or even better, you can tell Burke you’d like to have coffee with him so he can pitch you on giving to SJF.

And my update is that I’ve been teaching a little more yoga this fall, including workshops for activists and organizers, and others supporting parents of kids with disabilities and chronic illness/conditions. I feel incredibly fortunate to get to be teaching things that I also want to be learning, and that students keep showing up to learn with me.  Often in the weeks leading up to one of my workshops for parents, I’m more aware of the practices I’m planning to teach about being gentle and kind with themselves, and the breathing and movement practices to help parents be more grounded, energized, and centered… And I’m able to catch myself spiraling in unhealthy directions (often breathless anxiety about the endless to-do lists for both kids care) and I remember to be nicer to myself.  So I’ve been feeling incredibly lucky to get to study and teach practices that help me parent in the ways I want to.

(I’ll spare you the update on all of our sleep, or lack thereof… There have recently been some sleep-deprived days when every one of those great self-care practices fall by the wayside and I knuckle my way through the day on coffee, sugar, some growling, then too much facebook and netflix.  I’m not proud, and also not really complaining, but I couldn’t make this post too picture-perfect.)

Sunday was the final day of a week off from school for Thanksgiving break for Seattle elementary schools. We spent four days on Whidbey Island with our whole closest-extended family, with grandparents and aunts and uncles and cousins. Ida loved being surrounded by constant attention, and Lucas liked the adventures of kite flying with his cousins and visiting his favorite libraries.  Our go-round of gratitude at Thanksgiving dinner was deeper than years past, as Lucas and his cousins get older.  Our nieces talked about gratitude for being together, for the big meal we got to eat, and for our access to clean water. Lucas thinks in geologic and cosmic time — he sometimes asks me what will happen to earth when our sun explodes — so he said he was grateful for being on this planet in this time period.

Its hard not to write about the election here, but honestly there’s so much to say I think I have to hold off.  I appreciate Lucas’s grand-scope vision — it is a miracle of evolution and conception and genetics and the fact that earth came together just the right mix of oxygen and nitrogen and carbon so that that we can be alive at all.  So I’m with Lucas.  I’m grateful to be alive on earth, even at this time.  (And I’m so grateful for all the people resisting hate, resisting pipelines, showing up with vision and love and audacious courage in large and small ways every day!)

Lucas wrote his own blog post about the Thanksgiving trip.  He’s better at being concise with his words – especially when he thinks that finishing a blog post means getting to his dinosaur games sooner.  But still, here is his account of the weekend.

i’m happy to be with my family on thanksgiving because

i like having a good time .
making up jokes .
flying kites with my dad
playin galaxy bowling with my cousins.
eating dinner with everyone.
reading books with everyone .
playing games .
talking .
& flying the squid kite

We are overdue on a blog post about second grade.  The amazing problem is, there are too many fantastic things to write about.  Lucas has a wonderful, experienced, warm and welcoming teacher who is doing a phenomenal job of seeing big and small ways Lucas can be a full and celebrated member of her class.  The school just hired a new one-on-one aide for Lucas, and she is also fantastic — experienced, caring, motivated, and in grad school for special ed curriculum adaptation.  (And, Lucas would add, she gets fart jokes.)

And bigger than that for the school community — the principal is back from medical leave and the school community is more organized than ever.  Our ad-hoc group of parents we started calling the “inclusion committee” last year made some gains, and now we’re a full member of the school community.  Like almost all urban public schools, Orca is underfunded and stretched thin in too many ways, but parents and teachers fill so many gaps with love and funds.  The PTSA funds things like a garden teacher and a full time music teacher.  Parent and community volunteers make things happen like community-based service learning projects.  And recently Orca had its annual harvest festival in the beautiful school garden, complete with an apple press, lavender satchel making, and face painting.  It was a gorgeous fall day, and to top it off our friends Ben and Joe sat in the garden and played banjo and fiddle for hours (see video below).  It was one of those days that public school felt like the best place on earth to be.

You might remember Lucas’s letter asking you all to sponsor him for the school fundraiser last year.  It was called the Walk-a-thon (though in our family we called it the Walk-and-roll-a-thon).  This year the school has officially renamed it the Move-a-Thon.  It may be small, but since we’ve been asking for changes that will show that Lucas and his disabled peers are seen and included in school-wide events, this feels important.

So we’re coming to you all again asking for your sponsorship.  We’re a little behind – the move-a-thon is this Friday – so if want to donate, please do it right away! Here’s the link.

An upshot of more mobility: putting together your own outfit

On September 9^th, Ida officially let go of the couches/chairs/tables/doorjams/walls/hands she had been using to help herself navigate the world, and she started walking. She’s walking!

We all have so many feelings about her walking. It is so awesome to see both our kids learning, grappling with and then mastering any new task. Ida is far from “mastery” of walking yet, and she has the scars and bruises to prove how hard she’s working. But it is so exciting to see her do something she’s been working hard on. And she is absolutely pleased with her ability to now get around our house and get into things so much more easily.   And Lucas has gotten into celebrating this achievement, too. Burke and I had been trying not to make too big a deal out of the walking, but Lucas picks up on everything. A couple days after she had started walking, she was making her way across the living room toward Lucas. Clearly the two of us weren’t making a big enough deal of it, because Lucas cheered and called us over. “She’s walking! I saw her walking!” he exclaimed.

But just as you can probably imagine how joyous it is for us that she’s walking, you can also imagine how complicated that celebration feels in our family. Burke and I definitely celebrate Lucas’s awesome achievements – right now mastering hard math skills, learning to navigate a new keyboard and more apps, becoming so much more precise in his communication about his needs. His achievements truly are mindboggling. There’s no reason to compare any two kids, but obviously Lucas and Ida are on their own paths. I hope that we’ve made that clear to Lucas by now. I hope that his celebrating Ida without expressing much envy comes from a place of self-confidence we’ve helped him build.

Amazingly, up until his seventh birthday, Lucas has never spoken about wanting, wishing, or even wondering about doing things that he can’t do. But then one day on our road trip he suddenly told me that he wished he could chase the cat around like Ida. I stopped myself from giving our usual framework (“you can chase the cat, it’s just different because we’re pushing you in your wheelchair,”) and instead I told him I wished he could, too. I asked if there was anything else Ida did that he wished he could do. He said, “I wish I could crawl.” It broke my heart, not just for the simplicity of the wish, but also with pride. Even though he’s now grown up enough to put words to the fact that he can’t do things that most other kids can, he still moves through the world so joyously.

Walking means being able to keep up with friends more easily! This is Ida and Hazel.

But then, Ida was born with her own challenges, and we’ve lived with holding open the possibility that walking might not be the way she gets around the world. Although the difference is subtle to most people, Burke and I can still watch Ida waddling around with kids her age and see how much harder she has to work to get up off the ground and then to keep herself up. We can see the wobbliness in her joints and feel the extra softness to her chunky legs. So a piece of our excitement at her walking is related to her extra hard work, too.

Nonetheless, I feel a little bit clandestine about my joy at Ida’s walking. A couple days ago we had a time to walk around Columbia City on a bright, crisp fall morning. Ida and I were wandering around exploring this place where she has never walked before. She held loosely onto my finger as she walked 20 steps one way, then stopped to touch a potted plant. Then she pulled lightly and we walked over to the other side of the sidewalk to look at some glasses in a display window. I usually feel pressed to get somewhere, get something done, or get food in Ida before its naptime. But at that moment I was so present with the joy at being there with my walking kid, barely holding her hand as she guided me in exploring the range of her own physical possibilities. And I got to see exactly what things caught her attention – the shape of a long leaf, her reflection in the mirror, one person walking by but then not the next. It felt so incredibly good, like all the colors were brighter. I felt self-conscious, like I was getting more than my fair share of joy at that moment and that we were showing off by walking and wandering down the sidewalk together.

So we haven’t posted announcements or facebook videos or treated this new phase of Ida’s mobility like a pinnacle achievement. But we have been thrilled.

Meanwhile, Lucas just took a major new step of his own. Whenever we’re out at a playground kids come up and ask some variation of “whys-he-in-a-wheelchair? whats-that-thing-in-his-neck? Why-does-he-have-that-thing-and-that-thing?” Lucas never wants to answer himself, but usually after a staring kid finally asks a question, Lucas will say “I KNEW she was going to ask that!” But then just two days ago we were out at the park on the Sway Fun, the piece of playground equipment I think of as ours because we worked to get it there, and a group of older kids from Lucas’s school came over. They said “Hi Lucas!” And then they started asking me all the questions. I turned to Lucas and asked if he wanted to answer “why is he in a wheelchair?” He said sure. “I’m in a wheelchair because I can’t walk, and so it’s how I get around.” And then he added, “I’m going to make a slide show to tell people about my machines and equipment.” So matter of fact. So sure of himself.   September 25, 2016. My heart burst with pride again.

Lucas started second grade last week! It’s going well so far, and more to come on that.

For now we wanted to make sure that his blog fans know that Lucas is famous(er). An amazing multimedia show opened this last week that features the work of our artist friend Ellery (E.T.) Russian.

Lucas wrote this about going to the opening:

it felt good coming 2 c the movie .
i, i mean we, loved it
grrrrrrrrrrrrrrrrrrrrr8 movie .
i maybye just maybye i will again b come famous

The piece is not exactly a movie as Lucas likes to call it, but it does feature drawings based on photos taken of Lucas at our house, as well as audio of him talking about dinosaurs and being his usual goofy self. The stories of five other people with disabilities are intermingled with the clips of Lucas. It’s called “Casting Shadows; A video comic installation by E.T. Russian” and is playing at the Jack Straw gallery in the university district.

As you can imagine, Lucas likes being “famous.”  He lit up when he heard his voice and saw his picture projected on the wall.  And as his parents, it feels sweet to see our kid portrayed by an artist who has done such a good job of showing that people with disabilities are full, multi-dimensional people beyond and including their disabilities.  So their art balances this full-person portrayal with also being explicit about showing disability — you can see Lucas’s vent tubing and wheel chair, you can hear his unique speech.  And of course you can see that there are lots of other important things to know about him (read: dinosaurs), too.

The show is up for the next two months — Lucas says we should invite all our friends.  So if you’re in Seattle, check it out!