Lucas had a good weekend, highlighted by his first trip to the Unitarian church up the street. Krista has been going to All Souls for years but officially became a member today. We’ve gotten to know a bunch of people the social justice-oriented congregation, especially through a class she took there called “the Soulful Path,” so it was fun to introduce them to Lucas. A number of them brought us food and helped out around the time of Lucas’s birth, something we’ll always remember and appreciate.
In another cool connection, the pastor Rob Hardies lived in the same town in Guatemala — a post-war repatriation that was still experiencing trauma — as Krista back in the 1990s. He’s a great guy, and was prepared for our vacuum-cleaner sounding suction machine to kick on in the middle of the sermon should Lucas need it. As it happened, Lucas was kinda freaked out by the huge crowd, or the clapping, or the loud organ (or all of the above) and so we had to take him out into the hall early on, do laps and sing songs. It turns out he’s a lot more into “Old McDonald” than the holy spirit (for what it’s worth, there’s not much mention of the latter at All Souls anyway, as people “walk diverse spiritual paths”).
Lucas calmed down later and we were able to hang out for coffee and donuts after the service. A couple who was visiting from California came up to us and introduced themselves as parents of a young woman with disabilities, and they talked about how supportive their Unitarian congregation had been to them and their daughter. We talked to them for a while and it was a really nice connection to make.
Back at home, we caught Lucas perusing one of his favorite anti-imperialist magazines – WIN, the quarterly publication of the War Resisters League – and he proceeded to engage in a game of “where’s Lucas”. Halfway through we switched to video mode and recorded a pretty funny clip of Lucas. Enjoy!
Despite his questionable fashion sense (see previous post), Lucas is doing well these days. He’s added “cat” and “hug” to his vocabulary, and we’re working on “dinosaur” so he can start requesting more books by name. Unfortunately he’s still reticent to perform for the camera (besides waving his arms in the universal “gimme!” sign), but we’ll catch some more video soon.
Although I’ve been back almost a week, I thought I’d write a bit about my adventures in the northwest. (Krista writing, this time.) The trip was meant to be a combination of exploration and information seeking for our pending move, along a relaxing visit home. And somehow with what felt like a dozen meetings scheduled in two cities over the course of 5 days, I managed to make all that happen. Or, I should say, lots of people helped me make that happen.
Building on the research that Burke did a couple weeks ago, I went to check out another preschool in Seattle and met with a special ed service coordinator in Portland. Both meetings were somewhat informational, but like Burke’s visit, they were also hard. I was reminded of how complicated it is to describe Lucas. Often I found myself really emphasizing Lucas’s disabilities, stressing that he’s going to need A LOT of help. He can’t move his torso much. He can’t sit up, roll over without assistance, or lift his elbows if he’s sitting up… It feels terrible to describe Lucas in a list of negatives, but without doing this, professionals picture a more “typical” special needs child. In both meetings the professionals tried to be positive, but their “don’t worry, we’ll make it work for Lucas,” felt dismissive. That’s nice, I thought, but what about the fact that all the three year olds are in the sandbox right now throwing handfuls of sand at each other? Lucas’s chair could not get in the sandbox, and he certainly can’t have sand near his neck. I feel like we deserve more specific answers than “we’ll make it work,” but without having Lucas along side me to show off, I wasn’t sure what more to ask.
Of course I’m glad that the predominant philosophy in education now is to “mainstream” kids rather than isolate or hide away children with disabilities. But we also know that in a classroom Lucas is going to need nursing assistance, as well as creative teachers and aids who can help him and his peers into situations where he can express himself, learn, and play with other kids. Maybe it’s an unrealistic question to ask if those people will be there when we need them. But I wanted to know. Will there be an administration that really values difference, and models which embrace children of all abilities? And will there be wheel-chair accessible classrooms? And music rooms? And playgrounds?
We may be starting along this path of questioning a little bit early, but it feels like we should ask these questions before we choose the school district where we’ll live for the next decade or two. Ultimately, it seems that we’re going to have to trust that wherever we end up we’ll dig until we find the people who care about quality education for all children.
I also met with a pediatrician who we will likely choose for Lucas if we move to Seattle. She’s been in practice for a long time, and she’s worked with many medically fragile children. In contrast to the meetings with schools, she had a very clear idea of things she could help us with – home nursing, therapies, specialists, medical supply companies, etc. She even offered to help connect us with other parents of medically fragile kids, and she said she’s planning on reading My Baby Rides the Short Bus. (For our moms who are keeping the Portland vs. Seattle tally, that’s one point for Seattle. :)
One of the highlights of my trip was meeting Shannon, mom to a 9-year old with MTM. Their first years with MTM were very different than ours – their son was 2 when he was diagnosed with MTM and 3 ½ when he got his trach. But there are many things that felt very familiar and reassuring about meeting someone else who’s walked our path. Maybe most significantly, in light of some of our questions about schools, was hearing that Javad is thriving in his second grade classroom, and that his “typically developing” peers love and include him. It was also great to hear about some of the logistics of how they’ve structured their lives – the layout of their house, their nursing schedule, transportation options, power chairs and communication devises, etc.
Another major highlight of the trip was seeing some of the many people I love in the northwest. My mom and sister and I got out for a short but beautiful hike in the Columbia River Gorge. I got to see my friend Jennie who I’ve know forever, and who is now radiant and pregnant. And Alice, who somehow managed to act sane and hang out with me just days before turning in her dissertation. I was in Seattle for just 24 hours, but in that time I was lucky enough to get to visit with a few old friends as well as Ashley, Brandon, and our nieces. Madden, Ella, and Tya stayed up late to see me, and we read bedtime stories together. It was great to see them, and especially exciting to imagine cousin sleep-over’s that might one day have the girls reading Lucas his bedtime stories.
And it’s good to be back – I missed these guys! Here’s Lucas working on the sign for “go.”
Krista has been in the northwest since last Wednesday and we definitely miss her a lot. We’re holding up, but Lucas is looking pretty punk rock tonight with his greasy hairdo (maybe he’s not getting as many baths as usual or something…)
It’s been 80 degrees outside the last few days and Lucas is certainly enjoying the warm weather. Yesterday Krista made a little video that includes a noisy Lucas, and the blossoms:
You may have noticed that we’ve started tagging our posts so that it’s easier to navigate them. In the 20 months since Lucas was born we’ve posted 223 times (!) and so it’s gotten a little complicated to search through those old posts. With the new system, if you want to learn more about homemade blended formula (for example), you can click on “feeding” on the sidebar and scroll through the various posts. We also have a new category for “pics & video” which this particular post will be included in.
While we’re talking multimedia, we recently put some of our favorite pictures from the last six months together on Flickr – check out the slideshow here:
Yesterday we decided to take Lucas down to the White House for his first ever political demonstration (note: this is a long post – scroll to the end if you just want to see pictures). In the past, we’ve lamented that Lucas’s disability and medically fragile state has prevented us from being present as a family at marches and rallies, which is sad because getting out to a good protest is something we love to do. But since Lucas has gotten stronger and we’ve become more confident in traveling around with him, the time seemed right to break through the protest-barrier.
They were two other reasons that this seemed like a perfect first march for Lucas. First, the weather was great – warm but not too warm, with clouds in the sky but no chance of rain (Lucas can’t handle the bright sun and doesn’t much care for his sunglasses either). Second, some of our friends have been working for the last week to build festive, giant puppets to parade through the streets of downtown DC. This was not going to be your typical somber anti-war protest but rather a celebration of “disarm-ageddon”, complete with creative “art-tillery”, puppetistas, a festive marching band, and plenty more colorful props.
We assumed that bringing Lucas along for the entire march (from Dupont Circle to Lafayette Park) would be a bit much so we parked within a couple blocks of the White House and then walked back towards the approaching crowd. Once we saw them coming we perched ourselves on a street corner and got Lucas ready to raise a revolutionary fist. Everyone was overjoyed to see him – some friends on stilts approached, dressed up as the “four horses of the Apocalypse” (see photos) and waived, while another friend with a horn came over and honked in front of us. Lucas seemed calm (if a little overwhelmed by it all), so after the bulk of the march passed by we decided to jump in and join some more friends who were pulling up the rear.
And that’s when he lost it. Maybe the noise of the band and the chants became too much, but all of a sudden Lucas got an extremely angry look on his face, and then he just stopped breathing. He was connected to his pulse-oximeter but it was too loud to hear the alarm, and besides we can usually tell that he’s losing color well in advance of the machine starting to beep. With his lips started turning blue we quickly got over to the side of the street, pulled out his resuscitation bag, and gave Lucas some manual breaths as the march had moved ahead. In the midst of it all a nice person in an SUV drove up and asked if he should call an ambulance; we laughed nervously and said that everything was under control.
And indeed it was. One could perhaps accuse us of being irresponsible parents for bringing a ventilator-dependent child to a raucous protest, but we swear that weren’t putting Lucas in any serious danger. Sure, he was pretty angry with us at the time, but when we laugh with him about this story some day in the future we hope he’ll recognize that we just wanted him to have a diversity of experiences, and that inevitably a “first-time” like this can be a little jarring. And though the sight of us using a resuscitation bag on the street corner was probably alarming to a lot of people (much more so than the passing of a urine sample – see our previous blog post), it’s a routine that we’re now quite adept at. In matter of seconds the color was back in Lucas’s face, and a few minutes later we were ready to roll.
Since he seemed to have calmed down we tried once more to merge into the back of the slow-moving march but once we got close to the noise Lucas again got angry and stopped breathing. So we motioned to our friends that we’d take an alternative route back to the White House and left the hundreds of festive protesters behind.
Ultimately we found a spot in Lafayette Park about 50 feet from where people were streaming in and sat back to cheer them on. We got to say hi to Christie and Oz, frequent blog followers who live in Boston and who have therefore never met Lucas, as well as hang out and take pictures with Franny (who accompanied us when we split off). We tried to explain to Lucas why we were protesting the government on this particular occasion – it involved cutting off funding for the “School of the Americas” plus other US-sponsored military ventures in Latin America – but he didn’t seem to interested. In the end, we lowered his chair down and just let him chill amongst the blooming tulips; that was about as content as we saw Lucas all afternoon. Until we got home and he was as happy as can be…
First, here’s the latest (cute) Lucas video – you can see he’s getting pretty good at clapping and snapping!
Lucas had a great time with his Gramma Susan, who left Tuesday afternoon after a full 6-day visit. Lucas clearly reveled in the continued grandparent love and adoration, picking up new tricks, words, and games. It was relieving for us to have Susan around as she’s willing to pick up a book any time Lucas had a free minute (and Lucas almost always has a free minute – or hour when it comes to turning book pages.)
Frequent blog readers will remember that Lucas’s Stansbury-side grandparents were here just a few weeks ago, and that all of them plus his Aunt Megan were here just a couple months before that. Last week, when Victor heard that Lucas’s Gramma was coming for another visit he exclaimed, “Oh Lucas! You’re a rich man! So many people coming to visit you!” It struck us as a beautiful way of describing the good fortune we have, and a kind of “richness” we might really embrace. All three of Lucas’s living grandparents are healthy and excited to travel, have the means to do so, and are willing to make frequent trips across country to visit us. And, all of them (and the rest of our family) have come to love and accept and treasure Lucas as he is. Indeed, Lucas life is filled with riches.
Nonna and Papa (aka Lucas’s grandparents/Burke’s parents) were in town this past weekend for a short visit, and Lucas loved every minute of it. He took advantage of their time here to take them for a long walk in the park on a beautiful Saturday afternoon. He got in multiple tub baths, and lots of cuddling, singing, book reading and throw-things-out-of-the-crib-game playing. He got Papa to help his Daddy build him an indoor swing. And he showed off his increasing ability to communicate.
Lucas is getting speech therapy to help him figure out how to best communicate what he needs, and we’re offering him all the options — pointing at objects, pointing at pictures of objects, pictures with sounds on the I-pad, sign language, and verbal language. Lucas seems to be considering all the options, but the one word he most definitely knows and uses is the sign for “more.” (American Sign Language uses two hands for more, Lucas uses one.) At the end of a song, or at the end of a tickle, or at the end of any game Lucas has invented, he pulls one hand up and makes the knocking movement for “more.” Sometimes it’s small and looks like a request. Sometimes it’s fast and enthusiastic and more like a demand. We finally got video of the more sign, which will show you what Lucas thought about his first time on the homemade swing:
It’s been a good week for Lucas – he’s been rocking the xylophone (a Xmas present from grandma Susan), sitting up more in his chair, bouncing on the giant yellow peanut-ball, and smiling as he shows off his obsession with pointing his index figure repeatedly at his nose. Here’s a video of the xylophone playing – notice the hum of the vent is absent as Lucas is wearing his Passy-Muir valve:
He also started his new nebulizetreatment for psuedomonas, which has to happen twice a day but doesn’t end up being too much of a problem. Lucas was much more upset about his latest shot of Synagis, a drug that helps prevent high-risk babies like Lucas from getting the nasty RSV respiratory infection. Burke and Florence took Lucas into the pediatrician today for his monthly dose, and as soon as the (very sweet) nurse who administers the shot walked in the room Lucas started freaking out – he turned beet red, opened his mouth wide open in “cry-face”, and even shed a few tears. The nurse hadn’t even pulled out the shot yet! Presumably Lucas recognized her and figured out at that the moment what was coming… when she came back in a few minutes later with the shot Lucas went crazy again, this time even making whimpering sounds as she quickly administered the shot, half a dose in each thigh. Burke held his hand and we all had to chuckle a little – it’s never fun seeing a baby cry, but in a way it was kinda cute, and also nice to see Lucas demonstrate both powers of recognition and a strong emotion reaction.
Lucas has made a few more excursions outside lately and seems to be enjoying it. We watched the Super Bowl with friends Yari, Michael, Isham and Olivia in a house on the Maryland border, and Lucas seemed to enjoy the experience. He also had fun during the multiple block walk through downtown DC this morning on the way to the pediatrician. Then Krista brought him outside this afternoon to sit in the front yard and watch the people and cars go by. It was 50 degrees, the warmest day in a while, which has us all looking forward to spring.
Speaking of outings, a couple people have inquired about our last blog post and the “challenges” that led us to say that “there won’t be any more winter road trips this year.” The reality is that we probably didn’t describe well enough just how difficult it is to pack up Lucas for an overnight trip. It takes hours and involves a lot of worrying about which of the many spare parts/power-cords/medications we might forget. Last week we didn’t forget anything significant, but the fact that we spent 99% of the cold weekend inside watching movies had us thinking that we could just as well have stayed home and done the same thing. That being said, the view of the trees and the snow-covered hills was pretty nice…
oung woman with disabilities, and they talked about how supportive their Unitarian congregation had been to them and their daughter. We talked to them for a while and it was a really nice connection to make.
