Lucas Camilo

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.