Lucas Camilo

Today is the 20th anniversary of the signing of the Americans with Disabilities Act (ADA).  The civil rights legislation was meant to transform our country by making it illegal to discriminate against people with disabilities (officially around 50 million Americans have some kind of disability).  Today many people take for granted some of the achievements related to accessibility in public buildings, transportation, and other outdoor spaces.  The three of us already benefit from curb cuts (good for strollers, bikes and wheelchairs!) and wide doorways.  There was a 5-minute piece about the ADA on Free Speech Radio News talking about the achievements and shortcomings of the legislation so far.  Clearly there’s still a long way to go.  For example, the unemployment level for people with disabilities is at about 50%, the same as it was 20 years ago.  Here’s a good website that talks more about the 20th anniversary.

Some of the cultural transformations around access and discrimination are happening, though.  There was a short interview on NPR with an architect who talked about a philosophy of called “universal design.”  She explained that in designing a space architects shouldn’t think about people in two groups (abled/disabled), but as a whole variety of ages, sizes, shapes, and abilities.  Some people are taller and need taller chairs and desks.  Some people have vision impairments and need bigger fonts.  Some people are young or old or otherwise unable to climb stairs.  And on and on.  At least in the short interview it sounded like a good step toward complicating the superficial abled/disabled binary.

It was a fitting day for Burke to meet an amazing man named Harold Gomes who has a neuromuscular disease called Duchenne Muscular Dystrophy.  Harold in the cousin of an equally amazing young man named Yves who is scheduled to be deported on August 13.  Yves’s family was being interviewed as part of the latest “We Are America” stories project video shoot that Burke organized.  It just happened that Harold is part of this family from India that has been fighting the deportation of Yves, who came the the United States when he was 18 months old, and recently graduated from high school.  It’s a tragic story that points to the absolute injustice of our immigration system… and you’ll be able to see it soon once the video is online.  But in the context of this blog post it was Harold’s story that hit close to home.   Harold is a thoughtful, articulate, passionate man who works as a graphic designer, has studied the intricacies of the immigration system, and is a great example of someone who is able to interact with the world around him — at least in part because of the Americans with Disabilities Act.  Harold uses a wheelchair, has a tracheostomy and needs a ventilator (the same LTV 950 as Lucas) 24 hours a day.   Harold’s parents were also on hand for the shoot, and Burke showed the entire Gomes family Lucas’s blog, while talking shop about vent settings, trach changes, and home nursing agencies with Harold.

Another big development  has been getting to know — more personally — other families with children who use traches and vents.  On Saturday Krista talked with Amanda, a mom of a kid with MTM that we’ve emailed with.  Her son is eight years old, he goes to school, uses a wheelchair and ventilator, eats chocolate ice cream every once in a while, uses a g-tube, likes TV and video games, and was talking to his mom in the background as she and Krista were on the phone.  We took notes as Amanda told us about their first years experience with everything from sign language to blenderized food, from Medicaid eligibility to research on Myotubular Myopathy.  Amanda was part of the group of families that organized the first ever MTM gathering last summer, a gathering we hope will happen again so we can meet her and other families and continue to build these amazing, unexpected relationships.

Nonna, Papa, aunt Ashley, and cousins Madden, Tya and Ellody pulled out of town on Sunday night after a whirlwind 5-day visit with us in Washington DC.  For Lucas it meant lots more people around to hold and play with him, and in general he rose to the occasion.  His grandparents and aunt Ashley were especially impressed by how much progress he has made since their previous visits, as he showed off new stunts like his peanut-bouncing (see video from July 12), ability to swing toys around overhead, and the increased use of his voice.  It also made everyone happy to see Lucas smile and make other funny faces, and at the end of the day he clearly connected with Burke’s family more than ever before… which for us was wonderful and moving to witness.  At certain moments you couldn’t help but notice and extra twinkle in his eye or wiggle in his arms, which is Lucas’s way of showing just how pleased he is.

As for the three little ones (Madden is 5 years old and the twins about to turn 4) they brought a little less patience but just as much passion when it came to Lucas.  Madden especially showed a real curiosity and thoughtfulness – asking about the vent tube, or his feeding set-up, or the reasons behind suctioning.  Both at home in Seattle and while here in DC she talks about hoping that “Lucas gets better,” and to see that kind of tenderness from a child who hasn’t yet started kindergarten is really amazing.  On the other hand, we wondered to ourselves about how to talk with her and explain that Lucas is who he is, that he won’t necessarily “get better” in the way that she’s probably imagining; he’ll grow up and continue to develop in his own way, but he won’t end up being like the other kids she knows.  It’s a hard thing to explain to a child, but when we imagine having that conversation (with children and bigger people alike) we know we’ll keep highlighting the things Lucas IS able to do as opposed to focusing on what his disease prevents him from doing.

Over the course of the family’s visit we challenged the heat a couple times and got everyone out for some small adventures.  Lucas’s second visit to the zoo wasn’t nearly as triumphant as his first visit with Gramma Susan the week before, and it showed some of his current limitations.  For example, he doesn’t like to go out in the middle of the day when it’s 95 degrees and humid… but then again, who does?  He did a lot better on a cooler, cloudy day when we walked up to a playground with the whole gang.  There, he got out of his stroller, roamed around with Burke, and checked out his cousins zipping down the slide.   Later, Papa and Krista helped him bounce on a rocking horse, the first time he’s been able to actually play on one of the big toys in the playground.  He also did great when we brought him outside early Sunday morning and set up under the tree in the front yard to watch the leaves and bugs overhead.  And, he enjoyed having Madden spend one night with us.  In the morning the two of them laid on the floor sucking their respective thumbs and sharing rubs on Madden’s special “Mimi.”  Finally, as the family was about to head back to Seattle we managed to get everyone sitting together on the couch just long enough to snap this photo:

On Wednesday Lucas finally met his cousins Tya and Ellody for the first time!  (He met his oldest cousin Madden back in January… they were excited to be reunited this time around.)  Despite the sweltering heat, we’ve all been enjoying the family time.  Click on the pictures below to enlarge and see a beaming Lucas

Lucas had a great week with his Gramma Susan — lots of reading, cuddling, and bouncing.  He also got to watch his parents happily eat meal after meal of delicious vegan and raw food that his Gramma prepared for them.  Thanks Susan!

Lucas has been showing off his vocal chords, and his whale-like singing has been getting louder and more purposeful.  So yesterday Burke got out the recorder and taped some of his singing.  Here’s a clip. [audio:https://lucascamilo.com/audio/lucas_voice.mp3]

In this audio recording you can hear the vent in the background, but later we turned the vent off, put on his speaking valve… and for the first time Lucas made sounds through the valve!  It’s no guarantee he’ll be able to have long (verbal) conversations or give lengthy speeches about the nature of the universe later on down the line, but it’s exciting to imagine that it’s possible.  And in the mean time we’re loving his singing regardless of what it turns into.

Lucas has also been building leg strength, and he showed off his bounce for his uncle Isham, who shot this video on Saturday.  Lucas has been loving to use his legs to bounce for the past couple months, but the peanut-bounce has been even more exciting this past week ever since his dad figured out how to hang toys from the ceiling.

Besides Lucas’s gradma’s visit, last week was also exciting in other ways.  His overnight nurse, Victor, couldn’t come for the whole week, so we found out that we can take care of Lucas ourselves for a fairly extended period of time without totally wearing out.  And at the same time, Burke was really busy at work with the launch of the immigrant stories project.  You can check it out at www.weareamericastories.org.  Here’s one of the featured videos from the project.  It’s an especially moving story to us because we’ve known Ana and have been inspired by her passion and commitment for a long time.

Lucas braved the heat today and took his first trip to the zoo.  The low temperature last night was 81 (with humidity), so by the time we got out of the house this morning it was 90 degrees and getting hotter.  But Lucas’s grandma Susan is only in town for a few days, and Krista insisted that it’s summer and we should get outside… so Lucas reluctantly agreed.  (We went without Burke since he was at work madly getting ready for the big launch of his immigration project tomorrow.)  Lucas was groggy and sweaty but a good sport about the short-but-hot walk over to the zoo, and once we got into the shaded walkways he was a little bit happier.  He refused to look up at the groundhogs or the ponies, though, and his eyelids drooped with sweat as we pushed him around in his stroller.

But then we found the extremely air-conditioned Small Mammals exhibit, went inside for a moment of relief, and low and behold, Lucas perked up.  Together with another large family happy for the respite we wandered through and saw porcupines, elephant-shrews (so cute!), meerkats, and armadillos.  Lucas stared through the glass fascinated.  When the other kids caught up to us, they climbed over the front wheels of Lucas’s stroller to get a better look at the animals.  Although they looked for a minute at the tubing coming out of Lucas’s neck, it was nice to have young kids unfazed and not self-conscious about being around Lucas.  Their parents were great too – straightforward with questions regarding Lucas’s age and if he’d had a complicated birth.

After watching the armadillo pace back and forth for a while, Krista couldn’t resist explaining to Lucas that wild animals aren’t really meant to be in cages (although when the day comes that he understands what we’re saying we may not rain on his zoo parade so quickly).  Lucas seemed to have had enough anyway, so we walked back home.  It felt like another tiny set of victories – the first time Lucas has been away from home so long without both his parents or one of us and a nurse.  The first time he’s had strangers crawling over the wheels of his stroller.  And of course, his first trip to the zoo!

In other news, we want to congratulate Krista’s cousin Merissa and her husband Geoff on the birth of their baby – Mara Michelle Kelly – last week.  We look forward to the day Lucas can meet his growing extended family on the west coast.

On Friday Lucas was back at the hospital for surgery to put tubes in his ears.  We hadn’t mentioned this lately because in theory it’s a minor surgical operation, but nevertheless we were a little nervous in the days leading up to our latest trip to Children’s.  As it happened, we had to get up at 5:00 am to get there by 5:45, and believe it or not the waiting room at the surgical unit was already half full with families when we arrived.  Despite the early wake-up Lucas was in good spirits as we sat around for an hour before being led back to fill out paperwork, sign releases, and prep with the doctors.

In addition to the surgery on his ears to drain fluid and put tiny tubes in place, Lucas was also there to have a bronchoscopy to check out his airway.  The latter procedure was tacked on after Lucas had some strange breathing episodes back in May, and was to be preformed by our friendly Greek Pulmonologist known as Dr. K.  The only problem was that as the time for Lucas’s surgery arrived neither the Ear, Nose and Throat doctor or Dr. K were anywhere to be seen.  So we sat around for another hour getting entertained by an anesthesiologist with a very dry sense of humor until finally both docs showed up and we were ushered out so they could begin the procedures.

Not long thereafter we were called back to the recovery room with reports that both operations had been successful.  Lucas was still a little groggy when we got to see him, but in surprisingly good spirits once again despite the mild drugs he was administered.  The ENT doctor told us that he had removed a significant amount of fluid from behind his right ear and a smaller amount from behind the left, and that the tubes should help prevent buildup from happening again, and thereby improve his hearing.  Dr. K spent some time explaining his discoveries from the tiny camera that went down Lucas’s airway, concluding that the breathing issues were likely related to some occasional collapse in his lower airway, something not unusual with kids who have trachs.  We still don’t know exactly why Lucas has the occasional breathing episodes, but we had a grand time talking World Cup soccer with Dr. K and catching a chunk of the Brazil/Netherlands game as Lucas recovered.

Lucas has recovered well from his surgery and hasn’t even needed to take any Tylenol for pain.  Today we decided to wake him up early again and get outside before the temperature started shooting up into the 90’s.  We strolled out to our favorite spot along Rock Creek and settled in for a breakfast picnic.  Lucas played and napped and stared up at the trees swaying in the wind overhead.  Then we decided to give him a chance to feel the cool, fresh water in the creek (ok, it’s a little too urban to be “fresh” but no one was drinking it so it wasn’t so bad).  Burke waded into the water and dipped Lucas’s feet in up to his knees… and he got angry! Lucas loves a good bath but it turns out he’s not quite ready for the cold water yet.

We spent a glorious three hours in the park and Lucas only had a slight sunburn upon returning home.  We took some naps, had a pleasant afternoon around the apartment, and prepared for gramma Susan to roll into town for another visit.