Lucas Camilo

Krista and I were talking recently about wanting to write more reflections on this blog.   Many of our posts these days are rather straight-forward updates about Lucas’s life (which people seem to appreciate), complete with cute pictures or videos (which people definitely appreciate!)  But the longer, more thoughtful posts that grapple with disability and parenting have become less frequent… alas, as many of you know, it’s hard to keep consistent with a blog.

Part of the challenge of a parenting blog is figuring out how much to make public.  And then there’s the fact that it’s a shared blog – we’re not always in the same place emotionally and sometimes disagree about what to publish.  Mostly though, it’s a matter of time and prioritization.  We both love to write, though, and we were honored recently that a review of Lucas’s blog was written by the publisher of the new Rad Dad Magazine (which is about to premiere in the next month after having been upgraded from a longtime zine).   So here’s my attempt at getting back into it.

Scenes from the holiday month (note: we just took our Christmas tree down so I feel justified in publishing a fragmented review of “the holidays” on January 15).

** The 3 ½ hour drive from Portland to Seattle isn’t always easy for Lucas; last year he got so tired, uncomfortable and upset that we had to pull over in Tumwater, just an hour from Seattle, and spend the night.  This year we planned in advance and found a quirky “resort” 6 miles off I-5 and decided to stay the night and have an “adventure.”

And an adventure it was.  We were the only people staying at the Silver Lake Resort, and the caretaker had to be pulled from a family gathering nearby to let us in the door of room #2.  But the weather cleared up and suddenly there we were, watching a beautiful sunset at the base of Mount St. Helens on the porch of a run-down hotel overhanging the lake.  After the sun went down we tried to find a place to eat dinner but nothing was open… so we got some supplies at the gas station convenience store a few miles away and whipped something together in our room.  The next morning we got up earlier and took a mile-long hike along a wheelchair accessible boardwalk trail right as the sun was burning through the morning fog.  It was spectacular.

As Krista remarked the next day, our Silver Lake adventure is one of those beautiful things that only happen because of disability.  We’re not big vacationers, but were it not for Lucas’s disability its likely we would have taken a longer journey during our winter break.  Rather, for the fifth year in a row we remained within a 150-mile radius of our home during the break.  And that’s just fine by us.

** We stopped in Olympia on the way back from Silver Lake.  We found a great fair trade café and store called Traditions where Lucas was able to lie down, rest and play with blocks while we got a snack.   Two people started watching us intently from across the room and after a while they approached with a small gift for Lucas.  They asked about his condition and we explained that he has a muscle disease.  One of the two people remarked repeatedly how sorry she was, how bad she felt for Lucas and kids like him, and how they would pray for him.

It’s not an unusual situation, and though on one hand its awkward (and often annoying) to been openly pitied by someone you don’t know, on the other hand I do sometimes appreciate people who actually say what’s on their mind related to Lucas instead of immediately turning away (also a common response).

But here’s what I’m really left with: if the couple had actually been paying attention when they were staring at us they would have noticed how much we smiled, laughed, enjoyed being with Lucas and making him happy.  Instead of apologizing for how hard our life must be they would have been moved by the love that surrounds Lucas.  It’s something that makes me proud and keeps me going even when things related to Lucas’s life get really tough.  We are a happy family.  It’s possible to both grieve what’s difficult in our life – the fact that our son may not live a long life, that his disability prevents us from doing a lot of the things that other families do, etc. – and still bring joy to much of our experience together.

** After lamenting about never being able to take a full-on vacation…  we planned a full-on vacation!  We’re going to Los Angeles for 5 days at the end of the month, the first-time that Lucas will get on an airplane for a trip involving nothing other than pleasure, seeing friends, and leaving cloudy Seattle for sunny southern California in the dead of winter.  (He has flown twice before: once when we moved across the country from DC in March 2012, and a second time to go to the MTM family conference in Minneapolis last summer.  In the latter case we drove 2 miles from the airport to a hotel.  It was an amazing trip, of course, but we never left the hotel conference area.)

I’ve never been much of a vacation guy but its already been fun to plan this trip for Lucas.  We quickly figured out that the Museum of Natural History now has one of the largest dinosaur exhibits in the world… and Lucas currently is obsessed with dinosaurs, not to mention wooly mammoths and saber-tooth tigers which we’ll also be visiting at the nearby La Brea Tar Pits.  Of course, we’ve had to explain repeatedly that we won’t be seeing actual dinosaurs but rather fossils – which Lucas is perfectly happy with as he seems to like the way that “fossils” rolls of the lips.   We’ve also secured a place to stay through my friend Walker that is an accessible bungalow a few blocks from Venice beach and right across the street from a dog park.

I’m looking forward to this as a trip for us, too.  Krista and I haven’t taken a big trip together (other than our hotel-bound Minneapolis journey) for 5 years, since we travelled to Colombia in the spring of 2009 a few months before Lucas was born.    It’s kind of funny, but I’ve been studying up on LA history, loading our Netflix with films about LA, looking at maps and doing research as if we were flying halfway across to the world to explore a new country when in fact we’re going 2 hours to frigin’ Los Angeles!  And who knows, maybe Lucas will get sick or a piece of his equipment will conk out and we’ll have to cancel the trip… it won’t be the end of the world.  But like our one-night Silver Lake adventure last month, I realize once again how being Lucas’s dad has taught me to appreciate the little things, and feel deeply fortunate at how much we really have.  We’re planning family trip to LA – how awesome is that!

Happy New Year!  We’ve been busy, mostly enjoying the holidays and a bit of a break from time online.  So we may try to recap our last few weeks in a couple posts.  For now, a bit about Christmas.

As Lucas gets older he has more complex thoughts but still very unique ways of expressing himself. We were in the van driving to Beaverton, Oregon for Christmas when we pulled off a rural I-5 exit to give him some food. Things were going relatively smoothly on our drive, but the two of us were also in a bit of a zone – heads down, focused on our somewhat messy layout needed for tube-feeding on the road. Out of nowhere, Lucas declared (referring to himself as ‘you’), “You are so excited to go to Grandma’s house!”

We both laughed because it was so out-of-the-blue, and yet also so contextually appropriate. Lucas generally doesn’t talk about feelings, his or anyone else’s, and he rarely expresses looking forward to something other than by giving instructions that will move us from here-to-there.  (Ie. “you want to get up in your chair” is his way of telling us he wants us to put him in his wheelchair because he wants to be somewhere else.)  Many of you will assure us that the 4 year olds in your life don’t process feelings verbally either. But Lucas seems to be extra limited, confused, or uninterested in this area of communication. He rarely expresses “like,” and he may have never used the words “don’t like” together. If you asked him how he was doing, through most of 2013, his answer was “yeah.” He now says “happy,” but it seems equally rote. Maybe he’s a social genius and realizes most of us are less-than-fully-authentic when we answer “how are you.” But that seems unlikely.

Christmas seemed to unleash new kinds of joy in Lucas, and at various times – sometimes with words, and sometimes just with extra sparkle in his eye – Lucas has expressed his utter delight at the season.  The day we decorated our little Christmas tree he was a bundle of exuberance. For every ornament we pulled out, he’d ask/exclaim, “What’s THAT one!?!?” He’d inspect the ornament and then either direct one of us where to put it, or we’d lift him up and he’d place the ornament himself. For the rest of the month, every time he’d see the tree, he’d tell everyone “you did such a good job on the Christmas tree!” (remember: “you” = “I”).

On the last day of school there was a “holiday” party for all the kids in special ed. All of the 50+ kids, teachers, parents and aids gathered in the cafeteria, shook bells, sang Christmas carols, and got a visit from Santa. Each kid got to go up and sit on (or near) Santa’s lap. Last year Lucas was very nervous about the whole thing and barely tolerated getting near Santa. This year, before Santa was even comfortably seated in his chair, Lucas shouted out from the back of the circle “I love you Santa!”

We’ve both felt winter’s darkness at times this year, so it’s been nice to have Lucas fully in love with the better parts of Christmas: the lights, the candles, and the singing. He somehow doesn’t care much about presents, and he couldn’t even make a list for Santa when we asked him. (We didn’t ask very insistently – just to prove to ourselves that he really didn’t care. He eventually said he’d ask for stickers.) And it helps that our families are flexible. We celebrated pre-Christmas with brunch and a walk with the Stansbury side of the family a few days early, and our time with Krista’s family was restful – mostly focused on reading books with Lucas and taking walks around Grandma’s neighborhood.

When we got back to Seattle, Lucas and Burke returned to their routine of getting Lucas up in his stander in the evenings and spelling words with his magnet letters. Their game includes picking a category – animals, shapes, etc – and then trying to sound out often long, complex words. One night recently Burke got Lucas got up in his stander and Lucas exclaimed, “You want to spell feeling emotions!” So Burke helped him go through all sorts of possible feelings: excited, bored, tired, mad, sad, surprised, and, of course, happy.  Which Lucas certainly was.