Lucas Camilo

It has been over a month since we’ve blogged, so of course it’s hard to know where to begin. But here is some of the biggest news in a nutshell: Ida is crawling and Lucas has a new, wonderful aide at school!

We came back from spring break tentatively hopeful about a breakthrough at school. Burke had been on the hiring committee for Lucas’s new aide, and he had a pretty good feeling about the person the school decided to hire. But it is hard to tell in an interview, of course. We haven’t written a ton about school here because it can be hard to talk about the hard stuff in this intimate-but-nonetheless-public forum. I’ve started multiple ranting, furious blog posts about school that I never posted – about all the times they’ve forgotten about Lucas in planning events, about the ways in which his old aide was mentally and often physically not present (ie. regularly didn’t show up) to facilitate Lucas’s participation in school, about the hesitation in Lucas’s voice this year if someone asks who his friends are at school. It has been heartbreaking to see the many, many ways the adults at school have been failing him. (And his peers, too, I believe. By modeling that Lucas can be ignored and not showing them how to include him, they’re denying Lucas’s peers the opportunity to get to know a totally amazing kid sitting in their midst.)

Lucas dressed up for Super Hero Day (as Super Lucas, of course)

Lucas’s new aide was scheduled to start Monday after spring break, so I was excited to drive Lucas to school and meet this famous Dr. J. (Not actually his name, but our nickname for him.) He had met Lucas briefly as part of his interview, and when we pulled into school Dr. J came hurrying up to Lucas, got down right in front of him, and gave him a warm “Hey Lucas! It’s so good to see you again! How was your spring break?” Maybe it will sound like my bar is too low, but this – actually being at school, being there on time, and meeting Lucas with love – is such an improvement.

And although I was sending Burke “amazing!!!!” texts within a few minutes of meeting Dr. J, the real test was seeing if he could figure out how to help Lucas engage in class – do his classwork, speak up and ask questions of the teacher, and play with peers. Within a few days it was clear that things had drastically changed for Lucas at school. One of Lucas’s nurses said that she thought Lucas had participated more in the week after spring break than the rest of the school year combined. So needless to say, we have been relieved and grateful. And of course we’re still organizing. One of the rants that never made it into a blog post was written post-Dr. J – about the major failings of the school administration. But that’s for another day.

The other major change in our life is that Ida has suddenly become so much more mobile. She had mastered the roll around the house, but given that she is human and lumpier than a rolling pin she does not always end up in the place she aimed herself when she started rolling.   So then she’d push her way back up to sit, re-aim herself at the desired location (often Lucas’s suction machine or some other piece of medical equipment to tear apart), lie herself back down and roll some more. It made short distances navigable, but she rarely made it across the house that way.

A few weeks ago she started doing a few “steps” of a belly-down army crawl, which looked exciting. And then, despite it seeming so far out of reach, she suddenly found herself balanced on hands and knees. There were another couple days of tentative crawling steps, but that time has come and gone. She now crawls everywhere! Through every open door, over the puzzles and books and suction machine strewn about the living room, even around the yard and out onto the sidewalk with bare knees.

Surely a baby’s first crawling is exciting for all parents. But Ida is special. (So are your kids, of course.) She had to work harder than other babies to get here. And she’s older than most crawling babies, so I think maybe there’s more purposefulness in her gaze and glee in her huge cloth-diapered butt moving eagerly across the living room.

On top of all that, she has found her legs and is making some initial attempts at walking. She can stand and hold onto furniture, and she even cruises, albeit clumsily, along the edge of the couch. Lucas has always liked having a table in front of him when he’s lying on the couch, but today when he got home from school I realized the table now serves a new function. I left Ida standing at one end of the couch playing with a book and went into his room to grab something. When I walked back out, a mere 10 seconds later, Ida had scooted over and was standing in front of Lucas, getting ready to poke him in the eye. He of course can’t defend himself, so we’ll keep the table there as a shield, at least until she learns to pull herself up onto the couch. That seems like it is far in the future, but crawling and cruising seemed distant just a month ago, too.

Needless to say, we are so thrilled at how well both our kids are doing.

There’s more to say, as always. Future blog topics include: Lucas’s dinosaur fairy tales and jokes; reports on visits from so many friends; being a stay-at-home mom is hard; organizing parents for better inclusion at school; accessibility home renovations; Ida and the joy of watching her eat; sleep; bugs.

But instead of a to-do list that I may or may not ever get to (the story of my life these days), I’ll leave you with this. On Sunday I was gone all day, so I missed Ida’s first ever pulling herself up from kneeling to standing. But just getting Burke’s text was so exciting. When I got home in the evening, Lucas was diligently working on one of his old puzzles when Ida repeated her trick. Burke and I were so excited for her, and Lucas always gets in on the excitement for her too. Then we noticed that he had finished his puzzle himself – reaching up higher than he used to be able to. And we got excited about that too. The spirit of celebrating swept Lucas up and he declared “We should have a congratulations party!!” So we all put on some stickers, cranked up the music, and celebrated our two, wildly amazing kids.

Ida crawled here (not down the stairs, yet!) to supervise van washing.

Lucas helped Daddy wash the van on a recent beautiful spring day.

For Lucas’s spring back we went south to Oregon, spending two days with Krista’s mom and sister outside of Portland, and then traveling to the coast for another 3 days on the ocean. We stayed in the town of Lincoln City, and despite overcast and sometimes stormy conditions, we had a blast. For us, any time we pull off a trip – with a van full of medical equipment, special arrangements for wheelchair accessibility, etc – it feels like a major triumph, and our vacation on the Oregon coast was no exception.

Lucas typed up a story about it, and below that is a photo album. Enjoy!

spring break story

by lucas

it was fun
we went to a aquerreum .
we saw 2 pelacons named joejoe & wren .
i thout they looked the same .
we flew a kite on the orogen coast .
i saw an octopus in a cave .
we went in a shark tunnel .
we went in a beach house .
it was great .

Spring is arriving in Seattle and that means more walks in the park and other fun outdoor activities. Krista finally got a bike that she can rig up our baby seat up and carry Ida. We tested it out the other day:

https://youtu.be/dUh37iGoJJc

Ida was subdued during her first ride, but as you can see and hear from the video, Lucas was ecstatic. Which is a beautiful thing. Here’s a kid who, because of his disability, has never been able to do many kid things like ride a bike– but he didn’t show a hint of jealously or longing while cheering on his little sister. The chants of “Go Ida, Go Ida!” which Lucas initiated were music to our ears.

On one hand, its not surprising. Lucas is now six and a half years old but he’s never expressed remorse about his disability, or envy towards other kids who have the physical capacities to play in ways that he is prohibited from. The same can’t always be said of his parents. At a recent party for one of the kids in his class we showed up amidst the usual craziness that occurs when you get a dozen first graders together outside of school. Screaming children raced around blasting each other with squirt guns while Lucas sat in the middle of the deck in his wheelchair being virtually ignored. Our hearts sank. But all of a sudden Lucas got a huge smile on his face and exclaimed, “I can see the sun through the branches!” It’s hard to say to what degree he was oblivious to the wild kids around him, or just ignoring them, but it was clear that the pleasure of spotting the setting sun was genuine. That’s our boy.

But with Ida, perhaps, you’d expect it to be different. Already you have the built-in dynamic of the little sister who steals away some of the parents attention that used to exclusively reserved for him. On top of that, Ida is already able to do things that he could never dream of– if only because she’s not connected to a ventilator. Despite her own low muscle tone and physical delays, when Ida wants something she can often get it, usually by hitting the deck and rolling across the room to the object of her desire; she is able to enjoy the wonders of tasting and eating food (and boy does she love it!); and she can do other fun baby things like riding on our shoulders or being thrown into the air and caught repeatedly while screaming with joy.

Meanwhile, she’s also getting stronger every day and making some major break-throughs around crawling and standing. Here is where Lucas’s encouragement for Ida is truly remarkable. The other day Ida took her first few crawls — not far, but definitely moving forward on her own while on all fours. Krista yelled out “she’s crawling!” and Lucas repeated it with a questioning tone (“She’s crawling?!?”) and then said “I want to see her!!” She soon fell back down on the floor but Lucas had caught a glimpse and couldn’t have been more proud of his sister. The same happened when she started standing up more confidently a few weeks back. We often get her leaned up against Lucas’s table, which sits up against the couch that he’s lying on, so that he can look at her as she plays around with different objects. Though it annoys him when she grabs away his dinosaurs, he still comments proudly, “Look at Ida standing there!”

Of course, there are times when we’re so focused on Ida that Lucas ends up feeling left out, mostly because he’s stuck in a place where he can’t actually witness what we’re all doing. Still, he tends to be a pretty good sport about it, mostly just calling out “Mommy! Daddy! I want to see!” Such was the case in this recent scene where we were playing with Ida by the window while he read books on the couch by himself (also, you gotta love that Ida smile!)

https://youtu.be/WRA4gmDBRVQ

Having just wrapped up another dino-riffic weekend, I figured it might be time to illuminate all the ways in which our lives continue to be centered primarily around dinosaurs. Or at least that’s how Lucas would have it.

A typical morning in the Hanson-Stansbury household: one or both of us are woken up way too earlier by one or both of our early-bird children.  I struggle into the kitchen to put on the coffee and… “ouch!” Yup, there’s a particularly spikey plastic stegosaurus under my bare foot, apparently engaged in another unsanctioned herbivore convention on the dining room floor.  “Daddy! Daddy!” I hear from Lucas’s room. “Yeah buddy?”

“I want to listen to something!”

“Ok, how about one of your A to Z mysteries?”

“No, I want to listen to a Dinosaur World story!”

So I fire up a 20-minute audio book about some kids running around a zoo-like facility populated by dinosaurs, and get back to the coffee.

All too soon the story is over and the “daddy” chant has begun again — right as I’m sitting down to my coffee and morning newspaper. “What do you want to do now Lucas?” I sigh. It’s 6 am. The school bus doesn’t arrive for another two and half hours.

“I want to read something TOGETHER!” You guessed it, a dinosaur book. And so the morning continues, Ida and Krista joining us at some point and me occasionally jumping up to fire off emails to my east coast colleagues so they’ll think I’m working and not reading an ode to prehistoric creatures for the third time of the week.

This last weekend was especially dino-tastic.  It all started with a Friday evening lecture from Lucas’s paleontologist hero, Dr. Scott Sampson. Yes, that Dr. Scott (!!), the one from the PBS Kids series Dinosaur Train. (If you somehow don’t know of this brilliant man than watch this video immediately.)

The lecture on “Dinosaurs of the Lost Continent” was advertized for kids 10 and over but Lucas would not have missed it. He sat patiently through the whole thing, understanding parts of it, occasionally asking me questions, and making some jokes along the way as well (“Dr. Scott sure does like that picture!” Lucas said about a PowerPoint slide showing a map of North America during the late Cretaceous period that kept appearing on the screen behind him.) At the end of the lecture I jumped up on the stage and grabbed Dr. Scott before he sat down to start signing books.  I told him that my son was in a wheelchair and couldn’t come up on the stage– would he come over to say hi? He agreed wholeheartedly and came over and sat with Lucas and I for a few minutes as Lucas tried to explain that he had once seen a picture of a T-Rex with feathers (a reference from the lecture). A long line was forming but Dr. Scott didn’t seem phased. He asked if we wanted a picture but unfortunately I had left my camera in the car. Lucas will never forgive me, but we’ll always have the memory.

Needless to say, we were both pretty pumped up and star struck by hanging out with our hero. I have to admit that when Dr. Scott asked the crowd “who wants to be a paleontologist when you grow up?” that my hand shot up along with Lucas’s.  Because here’s the thing — after all the time we spend talking about and doing activities related to these creatures that died out 66 million years ago, I now realize that I am almost as fascinated by dinosaurs as Lucas is. Among other things, our exploration gets me ruminating about the enormous size and diversity of living creatures through the ages, about the nature of time and human habitation on the earth (compared to dinos and other prehistoric creatures), about the causes and consequences of mass extinctions… about everything that has brought us to this moment in the earth’s history.

So the truth is, the typical dino-filled morning (or afternoon, or evening) at our house doesn’t really bother me at all.  In fact, I love that our family is able to relate and be ridiculous through the vehicle of prehistoric creatures… not to mention through other funny things that Lucas obsesses over, from whales, to mystery books, to the Penguins of Madagascar, to Smurfs, to Caspar Babypants… but mostly dinosaurs.

So without further ado, here’s a not-so-exhaustive list of all the dinosaur related things we’re currently engaged in.

• Lucas and his nurse Katherine have been working for weeks on a dinosaur puppet show. Lucas wrote the script on his tablet, Katherine (who is a former architect and a creative genius) helped build the light-weight dino puppets that Lucas can hold, along with a small stage for him to lie behind while operating the puppets. Expect a video of the production coming soon.

• We attended our second annual “Dino Day” at the Burke Museum on Saturday and frankly the event was a little disappointing, mostly because it was so crowded and tough to maneuver the wheelchair around, or see the special exhibits. The highlight for Lucas, therefore, was picking up a new music CD titled “Cruisin’ the Fossil Freeway” that I estimate to be our 13th album dedicated to dinosaurs and their time. Note: you can order Lucas’s Dino Greatest Hits, a compilation of the best songs from all those albums, at any time by commenting on the blog or sending me an email.

• We currently have a giant glass bowl in on our dining room table in which there are growing a pair or sauropods and a pair of therapods.  Thanks a lot Susie!

• Among other mysteries that we’re currently trying to solve around our house: Is Ida already or will she grow up to be a “dinosaur girl.”  We know that she loves dogs but the jury is still out on whether she’ll follow in her brothers footsteps and become a lover of prehistoric reptiles.  We’ll keep you posted!

• You’ll recall that Lucas wrote his first blog post a couple months back; not surprisingly, it consisted primarily of his own recently composed dinosaur poems

• Even when we venture out of the house we tend to stumble upon dinosaurs. For example, our big winter excursion to the Olympic peninsula led to a rare sighting of the infamous “Snow-a-saur” (see picture)

• In addition to the 13 dinosaur albums I mentioned, here are some important numbers to know: we have more than 150 miniature plastic dinosaurs; three battery-operated dinosaurs (including a roaring T-Rex and a talking ankylosaurus, both courtesy of our local Goodwill store); over 100 books devoted to dinosaurs or other extinct prehistoric creatures; two dinosaur board games and three dinosaur card games; about 10 dino puzzles, including some of the block and floor variety; a few dozen dinosaur apps on Lucas’s iPad; six dinosaur t-shirts (including his “Herbivore” shirt which I have an adult size of and which we sport outside together on special occasions); five dinosaur wall posters;  and four dinosaur/pterasaur medley videos created by Lucas and I which you can watch on youtube.

With spring coming, the dino adventures promise to continue. Soon we’ll be out scouring our neighbors’ driveways and back yards for “fossils” once again. And then this summer our plan is to rent a wheelchair accessible RV and drive through the Canadian Rockies to the tiny down of Drumheller, “aka the dinosaur capital of the world.” Disability makes it tough sometimes, but we do what we can to live up to Dr. Scott’s motto– “Get outside, get into nature, and make your own discoveries” — with the inspiration of dinosaurs leading the way.

This past weekend we celebrated Ida’s first birthday, and our first year of being a family of four.   It’s hard to overstate how amazing any first year of life is, and Ida’s is certainly no exception. She’s gone from a totally helpless infant to having lots of personality and skill in getting what she wants out of the world. She smiles, rolls, grabs, turns pages, sits and plays, says “baaa” to balls, “boah” to dogs, “mamamamamama” with a loud cry at 5:45 am when its time to get up. She has the most amazing deep belly chuckle, that escalates to almost breathless writhing and kicking and when Burke is coming in for a tickle attack.

We first decided we didn’t want to throw a birthday party (too much work for a baby who doesn’t know the difference!), but that decision morphed into three days strait of wonderful, small celebrations. On Friday, her actual birthday, the four of us went out for pizza and beer to celebrate our family-versary. On Saturday we had a fun dance party with our extended family here in Seattle, including an amazing Xbox inspired dance party and Ida’s first experience of cake.

On Sunday we had a few close friends and their kids over for not-party number three, where we put party hats on cute toddlers and blew out another birthday candle. Our most special guests were Sha and Matt and their baby, Tighe. Tio Sha and Matt have been close to Lucas since he was born, so it was really exciting to introduce Lucas to their daughter and have them in town to celebrate both our growing families.

Ida loved it all. And as far as I can tell, Ida has loved just about every day on earth so far. She is an almost constantly content baby, either giggling, or saying “oooooh!!” at other babies or dogs, making fun faces as she smears food everywhere, or asking to be picked up and held. So I’m not sure if her birthday weekend felt any more special than any other day.

Everyone asks us “How’s Ida?” And we often just say this: She’s so happy. We couldn’t have ordered up an easier baby. (Did we mention that she’s gone from waking up almost every hour of the night to sometimes sleeping 11 hours straight?)

The other question that sometimes people are asking is “how is her body doing?” Or maybe they mean, “how are you, her parents, doing with her physical delays?” She’s so clearly different than your average baby by now. She’s one year old and she’s not able to crawl yet, much less stand on her own or walk. And the short answer is, we’re doing great. We’ve got a brilliant six year old showing us how to live joyfully with limitations. We have a happy baby who is figuring out how to move around.  Recently she’s become quite confident at moving around the room by sliding out on her belly from sitting; then rolling across the room; then pushing, pulling, and heaving herself back up to sitting. She usually goes for a bookshelf or shoe corner or backpack that she can quickly dump out and then inspect the contents.

And the more complex answer is that of course we worry. We hope that she’ll feel confident about living a full life, whether her disability ends up feeling major or minor to her. We wish that we didn’t have to add to our calendars the long list of appointments that come with motor delays. We wish she could keep up with her peers who are running around the room now. And we’re OK with all that, too. Lucas has taught us so much, including the fact that you can both wish things were easier and love exactly the kid you have in front of you. And that’s what we did this weekend. We loved up Ida exactly as she is. Brilliant and funny and moving in her own way around the world.

The short post-op blog update is this: Lucas is doing great.  He came home from the hospital just a day after surgery, and two days later he was back to school.  He appreciated all of the love – jokes, emails, videos, and emoji-filled text messages.  Thank you for your support.

The longer post-op story is that hospital stays are grueling, even when you’re there for just over 24 hours.  In many ways we are fortunate — Lucas hasn’t needed to be in the hospital for a long time, so some of the challenges that we’ve been through before manage to take us by surprise: doctors needing to be right all the time, even when they’re not; nurses determined to take vitals every 4 hours, even when the kid and his dad just need sleep;   discharge taking hours longer than expected because we need a few pieces of information that no one can figure out.  Hospitals can really suck for parents.

Meanwhile, Lucas was a champ.  He didn’t complain about the constant prodding, and when we asked him about pain he said it was minimal. We watched the Lion King (which Lucas had never seen before) and though it seemed to please the hospital nurse — who kept reciting the lines and singing the songs — even more than Lucas, it was a good distraction.  Lucas especially enjoyed reading all the emails and Facebook comments from friends on his iPad. Though we haven’t had a chance to respond to everyone, you should know that Lucas savored every word and felt genuinely special that so many people were thinking about him.

After Lucas got home from the hospital there was still some pain and discomfort so he ended up needing to miss a couple days of school for recovery — more than the doctors had told us he’d need.  But he rolled with it, saying that it just felt like an extended weekend. Burke had to go to Nevada for work for a couple days, but he got back in time for Valentines Day.  Although its not a holiday Burke and I usually get very excited about, it was so fun to see Lucas love feeling the love.  He was back at school last Friday and made valentines cards for all his friends, and was excited to read through the valentines he brought home from his classmates.  (“They all know I like dinosaurs!?” he’d say each time he found one with a personalized dinosaur picture on it.)

On Sunday we took Ida on her first zoo adventure, and Lucas had a great time visiting the animals.  That evening he was so inspired by love that he kept trying to invent his own little sayings… like “I’m feeling hearts inside myself” and “love is surrounding us all.”  And it wasn’t just cliche Valentines love.  Lucas actually feels and expresses a lot of loving thoughts these days, especially for us.  It is humbling to the point of overwhelming sometimes to have our six year old — the same one we used to describe as “not very concerned with other people’s feelings” — unabashedly showering us with love.

So Lucas is doing amazingly well, and all the outpouring of love and support is certainly helping Burke and me recover from our short stint at the hospital.  Lucas’s sleep has been pretty bad over the past few days and thus we’re still feeling a little frayed from the whole ordeal.  So keep sending Lucas your emails and emojis, and visualize a good nights sleep for our whole family one of these days.

Lucas getting “nuzzled” by Stanley as he arrives at the hospital.

Lucas made it through surgery!  This afternoon he’s drowsy, but he’s still asking everyone at the hospital their name and telling them that he’s a dinosaur guy and a whale guy.

Our morning started at 5 am, with a hospital check-in at 6:30.  Lucas was amazing — he cheerfully chatted up everyone who came into the pre-op room.  And if you haven’t had surgery recently, let me tell you that means A LOT of people.  While we were feeling grumpy about having to answer the same questions a million times (the questions on the hospital standardized lists, not necessarily the questions most pertinent to Lucas’s unique needs), Lucas stayed goofy and fun throughout.  He introduced everyone to Stanley (his stuffed stegosaurus), and he convinced the doctors to let Stanley come into surgery with him.

I was able to go into the operating room and – this is maybe a story for another post – when I started questioning the anesthesiologists vent settings they tried to usher me out of the room before Lucas fell asleep.  Needless to say, I stayed next to Lucas until he was completely out.  Even as the nitrous oxide kicked in, he was asking me about the different sounds in the room and making sure Stanley was nearby, curious but wonderfully worry-free.

The four hour wait was hard, but I felt lucky that Burke and I could both be here.  Burke’s job gives him the flexibility to work from anywhere, and then take off the hours that he needs to be there for Lucas.  So we took turns getting antsy and then making coffee runs and trying to read/work/email to distract ourselves.

We’ve been with Lucas in recovery since about 1:30 this afternoon.  For the first couple hours his voice was very faint and his eyes at half mast, but the anesthesia seems to be wearing off now.  His voice is louder, and he’s paying close attention to the dino story he’s listening to.  We had hoped we’d go home today, but its looking like he’ll probably spend the night just so that the docs are sure that he’s totally stable before discharge.

Lucas and Daddy and Stanley checking Lucas’s email post-op.

Lucas immediately wanted to check his email and he has loved the messages of support — thank you all for the love!  He was especially taken with the multiple dinosaur poems.  John Helmiere wrote his own (!!), but Lucas is also happy with pictures, poems, links… anything off the magical internet.  His other new favorite thing are emojis.

Finally, we want to send out shout out to Lucas’s grandfather (aka Papa) who also went through surgery today on his knee.  He’s recovering across town, and hopefully everyone will be home and healthy soon.

Tomorrow Lucas will go into Children’s Hospital for a long-planned surgery. It’s a relatively minor urological procedure… and yet it’s still surgery. We’re confident it will be success but still slightly nervous given that there’s always a possibility of complications when you go under general anesthesia.

Lucas seems pretty chill about it all.  It’s not his first surgery but it is the first time that he’s old enough to have a sense of what’s going on.  We’ve explained to him about the procedure and why its needed, and Krista even showed him some videos about kids going into surgery yesterday (including one with a doctor who had an awesome British accent, which Lucas always appreciates.)  He even said that surgery was his “bud” for the week – i.e., what he’s looking forward to.

At any rate, we just wanted to let friends and family know so that you’ll be thinking of Lucas tomorrow afternoon… and maybe even send him a message of support.  He has his own email address now (lucas@estansbury.com) and though it takes him a while to write individual responses, he loves hearing from people and writing silly things back.

Lucas saw his first full rainbow the other day!