Lucas Camilo

It’s been an up and down holiday season for the Stans-Hanson family.  We’ve had some highlights, like the Christmas day walk in the park and the visit by Krista’s family (Burke’s parents arrives tomorrow).  But we’ve also had some big challenges and hard moments.

Burke was gone in mid-December visiting family in Seattle and then doing video at an immigrant rights conference in Montgomery.  In addition to a good time with family he had a few different job interviews while he was in Seattle.  One possibility with a great organization got us particularly excited, even thinking that our move to the Northwest could be imminent if it worked out; alas, it was not to be as they offered the job to someone else.  There are a couple faint possibilities still out there but this setback has us thinking that we’ll have to push back our timeline once again.  Burke is finding that it’s not easy to get the kind of job he wants in Seattle so we’re also getting creative about other possibilities.

We’ve had some beautiful and unseasonably warm days in DC recently, but in general we have felt the weight of winter days that have grown cold and short, with darkness descending all too early.  Indeed, sometimes living in a relatively small basement apartment can start to feel isolating, especially in the depths of winter, and especially given the challenge of Lucas’s health issues.  Over the past year venturing out of the house has gotten easier for us – we’ve become more adept at packing up Lucas and all his accessories, and Lucas is stronger – but on 35 degree days there’s not a lot of allure to go out walking.  With a typically developing kid it would be easy for one of us to jump in the car and zip to a museum, or a cafe, or the library… anywhere, really, to get a change of scenery.  But of course with Lucas such trip involves a lot of planning and preparation, especially because he still needs both of us (or one of us and a nurse) for any major journey out of the house.   Packing up Lucas and his wheelchair, ventilator, suction machine, and emergency bag for a trip, then checking that all the supplies are stocked in the various bags has all become second-nature for us.   But it’s still complicated and time-consuming and all that stuff limits your options of where to go and how long to stay.  So if one of us is working then the other one most likely is staying put in the house with Lucas, hanging out in the same 24 square feet of our living room each day, working hard to make it a fun and engaging place for Lucas.

So despite a few good walks and a party at our friends’ Max and Jess’s place on Sunday, the holidays have done a lot to remind us of our limits.  Flying to the other coast to spend Christmas with our extended families simply isn’t an option, nor is a vacation in a warm place (unless we decide to take a long train ride to Florida).  And now that Lucas’s favorite nurse Florence has taken a new job at a hospital, our options for occasional escapes closer to home are even further limited.  (We’re actually still in denial about Florence leaving so we’re not going to say anything more about that for now.)  Ultimately the winter darkness, combined with the cramped spaces of our apartment, can make the rest of the world feel painfully out of reach.

We don’t mean to complain, and in fact we feel immensely lucky every day to have Lucas with us, and awed by all that he does.  We tend to be pretty positive people (as you can tell by the tone of most of our blog posts) and so we’re also doing a lot of things to make the holidays fun for us and Lucas.  Like making our own refrigerator magnets.  And singing the “birdie song” with Lucas ten times a day while dancing around the living room.  And sitting down to talk about all the amazing organizations that we donated money to over the last week.

Lucas was also made famous on the radio recently… or at least on a podcast :)  Burke helps with a website called The Fight Back and a few weeks ago his friend Pete interviewed Lucas’s favorite radical children’s songwriter, David Rovics. Check out the full post here, and listen to the section preceded by a Lucas-inspired question below:

[audio: https://lucascamilo.com/audio/David+Rovics+short.mp3]

It was a beautiful day for Christmas so we went for a walk in nearby Rock Creek Park. Lucas made lots of requests to go “fast!”  Here are a few pictures and a video of us hanging out alongside the creek.  There’s also a shot of him playing bells for a special version of “Rudolph the Yellow-Nose Cow” – he insisted the Rudolph’s nose not be red and would only go along with the song in the first place if Santa was being pulled by cows…

Lucas also got a card from his cousins Madden, Tya and Ellody that made him very happy:

The end of year business has taken over our lives a bit, so we’ve been away from the blog too long.  Krista has had homework and finals, we’ve been busy helping with year-end fundraising for the organizations we love, and then catching up with friends at holiday parties and activist awards dinners.  Krista’s family was here for almost a week for a great visit, and Burke has been gone this week first to Seattle for a couple job interviews, and now in Montgomery, Alabama where he’s filming at an immigrant rights conference.  So we’re looking forward to the quiet of Christmas…

If Lucas were to list the amazing recent developments in our life, it would probably start with our Christmas tree (especially his shark ornament) and end with a list of the names of lots of friends and family.  Lucas could already sign “Gramma”, but last weekend he also learned to say “Aunt Megan” (he makes an “m” sign that looks like a fist and pounds his chest), and he learned to make a “c” and point at Charles (Gramma Susan’s boyfriend) whenever he came in the room.  Upon realizing that we were understanding his new words, Lucas lit up and with pride repeated the names over and over and over.  He’s now expanding his name vocabulary and signs the first letter of various people’s names when they walk in the room.

Lucas is still obsessed with books, so he had Gramma and Megan read to him as much as possible.  He’s memorized his shark book, so at this point he completes every sentence whn the reader gives him the chance.  Susan got the hang of it.  “Today my class goes to the…” and Lucas says “sea park.”  “Some fish are…” and Lucas says “pretty.”  We’ll try to get this on video, because it’s hard to describe how exciting this is given Lucas’s challenges around vocalization.  But he does it so well that when Gramma Susan paused after “In the lunchroom there’s a…,” Lucas declared “swordfish burger on the menu!”  It’s muffled, of course, but also clear as day for the close listener.  We hooted and laughed, which Lucas took as his cue to repeat the phrase a dozen more times.

He’s continuing to evolve his combination of sign language and spoken words to communicate more easily to more people.  I was sure that Burke and I would need to be doing constant sign interpretation for my family but with a little help they figured out how to understand Lucas.  Indeed, he can be pretty adamant when he’s asking for something, impatiently responding “noOOooooooo!” if anyone guesses wrong.  And if we’re right, he declares “YEAAAAAaaaaah!” with a big sigh of relief.

Part of what makes this so exciting and so complicated is that there are times when good communication seems totally out of reach.  Like when Lucas is not lying down, for example.  Sitting in his kid-kart chair seems to reduce his lung capacity, so he can’t muster the air to make sound, or even enough energy to sign sometimes.  So there are moments – especially when we’re out with Lucas – when the kid you meet on the street and the one we’re describing here do not coincide.

However, when Lucas is in the right position – and with lots of adoring family at his beck and call – he is perfecting the art of asking for things.  Combine a “Neanana,” a banana sign and the right tone of voice and you get “Nothing Could be More Urgent Right Now Than Getting Me a Banana!”… which was enough to get Gramma on the case.  Megan brought him some really great, soft, naturally scented play dough from Eugene (she knows the owner/dough maker of this cool company – check them out if you’re looking for a gift for a kid), and Lucas got really into playdough for the first time.  But even more than molding it himself, he liked the power of calling out letters and shapes that Megan and Gramma would make for him.

And then there’s the tree.  He already enjoyed the power of telling us to turn lamps on around the house, but now each morning he wakes up and, still groggy and with his thumb half in his mouth, he points at the Christmas tree and says “on!”  Throughout the day he points at the tree, grins, and says “tree!” admiringly.  And at night he asks us to bring him the shark ornament, which he pets and kisses before going to sleep.

We could go on and on.  Last night he said  “I want to play animal cards with Mommy.”  Really.  First he was signing “animal cards mommy” on his own, which meant he wanted me to set them up for him to play memory.  So I asked him to say it with his voice too, gave him the sentence, and he said it!!  I want to play animal cards with Mommy.  Amazing.  He also asks for Daddy at least a dozen times a day.  Last night I told him we couldn’t call Daddy on the phone because Daddy was in an airplane.  To which Lucas replied, “Daddy on the computer!” (meaning we should call him on skype.)

 

 

 

 

 

 

Lucas was recently featured in the newsletter “Our World” from the British non-profit Information Point for Centronuclear and Myotubular Myopathy.  Krista wrote up the entry and we figured we might as well repost it on Lucas’s blog (in part because we’ve only had one new post in the past three weeks).  Enjoy…

 

All About Me – Lucas Hanson

Lucas is 2 years old and lives with parents Krista Lee Hanson and Burke Stansbury in the USA. Below Krista and Burke write about their life with Lucas.

Lucas Hanson is a beautiful, funny, easy-going-yet-quite-opinionated two year old who knows exactly what he wants all the time. He loves finger painting, looking at books, listening to music, playing games on the i-pad, ‘eating’ (sucking on) bananas and dancing around the room in our arms.

Lucas was born on August 17, 2009 in Washington DC. He was two months premature, thin, weak and bruised; he made no effort to breath. His massive internal bleeding – including in his brain – led neurologists to believe it was a brain injury causing his hypotonia. He spent the first three months of his life in the NICU. When he was two months old he had surgery to place his trach and g-tube and at three months, even without knowing why he had such severely low tone, we were thrilled to bring him home.

It wasn’t until he was six months old that a neurologist recognized his symptoms as a myopathy. They suggested doing a biopsy, but when we read about CNM and MTM, we were sure Lucas had MTM. And indeed, we skipped the biopsy, and soon a blood test confirmed that he has x-linked MTM.

We’ve kept a pretty active blog of Lucas’s life since he was born to try to describe to our friends and family the amazingly complex and emotional journey it has been to become Lucas’s parents. (It’s www.lucascamilo.com). He’s a bright and wonderful kid, but he’s also really hard to describe to someone who hasn’t met him. He uses a vent about 22 hours a day. He can’t swallow or roll over or sit up or even lift his head up on his own. We’ve only met a few kids with x-linked MTM, but it seems that physically Lucas has one of the more severe manifestations of the disease.

In the year since Lucas’s diagnosis he’s taught us incredible things about ability and disability and the joy that is possible even when walking or running or swimming or sitting or breathing unassisted are not likely to be part of your future. Despite all his challenges, Lucas is one of the happiest kids around. He is learning to communicate using ASL (American Sign Language) and vocalizing. He loves playing games and asks to watch animal videos on YouTube over and over and over again. He’s recently learned colors, and this fall he’s loved going for strolls around our neighborhood and identifying the different colors of the leaves (yellow is his favorite).

Obviously there are days that, despite all of Lucas’s gifts, living with MTM is really hard. We see other kids running around wildly and wish Lucas could easily skip around the playground and jump on the swings with his peers. We have days when the task of parenting of a medically fragile kid feels extremely isolating. There are days we can’t help but worry about how big he is already, wondering what will happen when he’s not so easy to lift. And in the U.S. we have to deal with an incredibly broken health care system – one that sometimes puts us in the hands of loving, competent doctors, but often just puts us through many wasted hours of navigating bureaucracy and figuring out how to keep health insurance for our kids. We’ve been fortunate so far in terms of health care, but many people with disabilities in the U.S. have not.

Since Lucas was born we’ve experienced love and grace and beauty that we could never have known without Lucas. A big part of the fact that we’re doing so well is thanks to a huge, extended community of family, friends, and professionals who have supported us in big and small ways. Lucas has two wonderful nurses and three great therapists (physical, speech, and occupational) who come and work with him in our home. They are young and enthusiastic and bring as much love as technical knowledge to their work.

Our friends have worked hard to not just love Lucas completely, but also to figure out ways to make gatherings and events accessible to Lucas and all our specific needs. Lucas’s grandparents all live on the other side of the country, but they’ve made many, many trips to Washington DC since he was born, and they chat and read books to him via skype regularly, so he feels very connected to his Nonna, Papa, and Grandma. And we’ve also been fortunate to connect other families living with MTM and CNM. Krista went to the second MTM / CNM Family Conference in the U.S. this summer and was able to meet dozens of amazing families. We are grateful for all the support we’ve received from friends, family, and practical strangers, and we look forward to continuing to build relationships with the MTM / CNM community of families around the globe.