Lucas Camilo

Yesterday we had the privilege of joining about 100 other people from across the state for a Washington Care Council grassroots lobby day in Olympia.  The lobby day was part of the Caring Across Generations campaign which brings together people who need home care — mostly elderly people and people with disabilities — and people who do caregiving work.  It is in all of our interest to see more funding for in-home care and an increase in the value placed on such work.

The lobby day was extremely well-organized and successful (props to our friend Susie – we know that it’s NOT easy to pull something like that off!)  We spent the first part getting to know the issues and hearing each other’s stories.  And the stories were all so powerful.  Care providers who worked for years providing health care services, as well as all the love and passion involved in caregiving, only to find that when they needed health care they didn’t have insurance or means to pay for it.  There were many people — almost all women — who do this work informally as housekeepers, but then also get called on to do more health-related personal assistance.  One woman told the story of how she works three jobs to take care of her children, including paying full college tuition (not in-state) at the UW because her family is undocumented.  A man with disabilities named Charlie (see picture with Lucas) and one of his care providers came together from Spokane.  They both spoke passionately about the dignity that comes from being able to receive care — help dressing, bathing and moving around — that allows Charlie to stay in his home.  His care provider talked about how much she loved her work, but also how many people she sees come and go because the starting pay for a personal assistant is around $10 an hour.

We shared Lucas’s story, and he got lots of loving attention.  We talked about how critical home care has been for our family.  When we met with our legislators (Lucas’s least favorite part of the day), we focused on the importance of Medicaid expansion so that more people can have the quality of life that comes with receiving home care.  We talked a little about the Community First Option, which prioritizes people staying in their homes over moving into nursing homes.  And we advocated for immigration reform generally, and specifically the passage of the Washington State Dream Act (which would allow all Washington residents, regardless of immigration status, to pay in-state tuition).

It was a big day for us — bringing together some of the organizing work Burke is doing professionally, our experience with doing this kind of grassroots lobbying in the past, and our very personal and emotional connection to the issue of health care reform.

The one downside of the day is that the Senator and Reps from our district (37) are already quite supportive of these issues, so it didn’t feel like we had a huge political impact.  But while we were standing in the hall, a legislator caught site of Lucas and came over to ask us about why we were in Olympia.  He seemed genuinely taken by Lucas, and surprised to hear about what is required financially to care for him in our home.  We got his card (he’s a Republican from eastern Washington) and plan on following up with him to emphasize that voting to expand Medicaid means voting to take Federal money that will help provide jobs and additional health insurance for hundreds of thousands of people.  It seems too obvious to even need to discuss, but it turns out some Republicans (including the majority in Montana where Burke was just spent four days for work) reject it because it’s part of “Obamacare.”  The Montana state legislature will likely refuse to expand health coverage to low-income people, a tragedy given the great need that exists.  So in the end, we hope that in addition to making connections with wonderful activists yesterday we also helped gently nudge a skeptical legislator toward supporting expanded health care.

While I was on my fantastic mini-vacation in the Bay Area, I read Boy in the Moon. It could be called an odd choice – to take four days away to rejuvenate myself, and spend it reading about parenting a kid with severe disability.  And not just any book about disability. As Burke said in the last post, this book tells the absolutely beautiful and painful journey of a father trying to understand the meaning of life and disability with a situation much harder than ours. The author Ian Brown pulls no punches. Though the contours of our life with Lucas are really very different, I found myself crying tears of recognition just about every time I picked up the book. Like I said, questionable choice for my get-away reading.

Brown’s willingness to delve into the hardest part of parenting and disability made me think about what Burke and I choose to write here, in our public forum. I rarely have an awful day and think “I really want to tell our blog readers about this.” I come here when Lucas or the amazing people in our lives have made me smile again. When despite everything, our life feels incredibly full. And of course I’m going to do that again, now. (I mean, it’s spring: the daffodils are out, our magnolia tree is about to explode soft pink everywhere. I can’t help but feel good today. ) So thank you all for indulging us in our often glowing reports about life with Lucas. I promise to come back with the hard days, too.

Probably the biggest development is Lucas’s world these days is that he is obsessively curious about letters and numbers, verging on learning to read. Today we were in the van, and I heard him chanting “S-T-O-P stop.” When I realized what he was doing, I asked him where he got that. He saw it on a sign, he said.

And in fact he has memorized at least a dozen or two words that he can spell and recognize – cat, dog, hat, etc. And he’s getting fast. Yesterday he picked up one of his current favorite books, a National Geographics Kids books called “Penguins!” He asked himself how to spell penguin, then traced his finger along the title and quickly read “P-E-N-G-U-I-N-S-I.” We’ve been through this before (the “it’s an exclamation point, not an I” conversation), and yesterday I entertained myself by trying a little harder. I covered up the exclamation point and pronounced “penguins” with as much dullness as I could. Then I uncovered the punctuation, and read “PENGUINS!” with utter excitement. Lucas LOVED it. He has trouble with enunciation – we’ve worked for a year on helping him make P/M/B sounds. But he’s a master at mimicking intonation. So he said “PENGUINS!” with the exact same up and down tones, the same emphasis and glee and exclamation as I did. He was so proud of himself.

The other game Lucas loves these days is getting himself near a digital clock (either lying in our bed in the morning, or even better, holding a cell phone) to “read the numbers.” He can read the first nine minutes of an hour easily (“Mommy, it’s four-oh-three!”), but numbers above nine are harder. I know he’s been working on recognizing ten through nineteen with Papa, so yesterday we sat out in the sun on the back porch, and played the “put two numbers together” game. I’d ask “what’s one and two together?” He’d think, and think, and then say “twelve!” After a while, he asked for a “hard one,” then a “really, really, really hard one.” So I gave him “two zero.” Then “two two.” I could almost see the smoke coming out his ears as he voraciously tried to piece together this number language. It was a stretch, and he’s not quite ready to sign up for a junior genius chess match yet, but it was so fun to see him so absolutely curious about the workings of number words. He eventually asked me what “eight nine together” is. I told him 89, but encouraged him to stick to the lower numbers. He responded by asking what “eight nine ten together” is. Hah!

Burke is in Montana for a few days for work, so it’s my turn to be home with Lucas on my own. But since it’s week days, the truth is I’m really not on my own at all. Lucas is in school in the mornings, and his nurses come home from school with him and spend the early part of the afternoon with him as well. I feel so incredibly lucky about the nurses we have. They both are so good with Lucas in so many ways – he’s always happy to see them in the morning, and he’s won both of them over so much that I’m pretty sure that most days they really look forward to coming to work with him. And as we get to know them more, they also feel a little more like family, less like strangers in our home. And now that spring is here, they’ve both ventured out for afternoon walks (alone!) with Lucas around the neighborhood. Though it’s not that different from taking him to school, it’s another one of those things we never could have imagined just a year ago — someone other than one of us taking Lucas out for a stroll. He seems to love it as they look for chickens, or dogs, or daffodils.

Have we mentioned lately how cute he is when he sleeps?

It was exactly one year ago that we packed up the last few bags in our Washington DC apartment, drove to the airport, and flew on an airplane with Lucas for the first (and only) time.  We arrived in Seattle that night exhausted but relieved that we had made it across the country without incident.  It was actually kind of fun… and, a year later it’s fair to say that we’re happy to be here in the beautiful Pacific Northwest (even if its dark and rainy today).

The airplane isn’t so bad afterall :) – 3/13/12

The other night we were laying in bed reading as Lucas fell asleep.  It had been a good evening – Lucas was being goofy and hilarious, as he often is right before suddenly hitting the wall and announcing (reluctantly) that he’s ready for bed by stuffing his thumb in his mouth.  Such was the case on this particular night, and after tucking him in and reading “Buglette the Messy Sleeper” — his favorite bedtime book — Krista and I were finally about to get some rest ourselves.  But we couldn’t stop thinking about Lucas.

It’s hard to explain how happy it makes us to see Lucas at his best, so pleased with himself and the world.  Lucas’s energy can vary a lot, but when he’s on fire he can be incredibly resourceful, communicative and, as we’ve mentioned a lot recently, funny.  His day-to-day life has become very “normal,” and enjoyable, in ways that lead us to sometimes forget that he has a severe neuromuscular disease.

And so it was that we ruminated that night about what Lucas’s life must be like for him… not with frustration or sadness but rather curiosity, and perhaps empathy.  He seems so happy most of the time, and is totally content just directing us towards whatever it is he needs – “doggy book!”, “play the go-fish game!”, or “do the Caterpillar Ap on the iPad!” are among his favorite instruction these days.  Depending on others to fulfill his needs and desires is all that he’s ever known, and of course all kids are dependent on their parents and caregivers during the first years of their lives.  Yet Lucas is now three and a half, and though he’s not the most self-aware kid, he is very intelligent and observant and must be starting to notice that others around him don’t have to ask (repeatedly!) to get their favorite book… they just walk over and grab it.

We can observe and imagine what it must be like to grow up with muscle disease and not be able to access anything outside the 1 foot radius of your immediate reach.  When Lucas is sitting up his muscle strength is so weak as to prevent him from doing much of anything physical, unless his arms are on a tray or table, in which can he can hold something in his hand or push an object around.  If he’s lying down he can move his arms around a lot more, including behind him and above his head (it’s often surprising to observe some of the stuff he can reach.)  His range of vision is also limited by his muscle disease, though he often has a sixth sense about what’s behind him or to the side.  But ultimately he’s in a very vulnerable position because of all this; it’s not surprising that despite the fact that he loves dogs he freaks out when they get too close.  If they make a quick move, he has no way of defending himself.

There are other ways the effects of his disease play out.  For example, Lucas has never identified hunger to us.  He doesn’t seem to make the connection between “eating” — which for him involves having blended up food pushed through a tube directly into his stomach — and satisfying the hunger urge.  He misses out on the pleasure of eating tasty food and can’t just grab a snack if he feels low on energy.  We try to simulate typical eating practices but giving him four meals a day, three of them corresponding to the breakfast-lunch-dinner cycle.  But it’s not the same.

And then you get beyond basic needs, to what is childhood really all about: playing, expending unbelievable amounts of energy, having fun.  Here as well Lucas often misses out, especially on the physicality of childhood games – running, jumping, skipping, tumbling.  We’ve surmised that his obsessive attention to books and learning is in part a result of being prohibited from such play, but perhaps this also contributes to the keen sense of humor that Lucas is developing.   It’s how he amuses himself in the absence of doing all those physical things that other kids are out doing.  Sometimes you can hear Lucas talking to himself for long stretches, playing around with the tone of his voice, repeating things he’s heard over and over again.  It makes him so happy, and why not?

In light of all this, Lucas’s ability to communicate is hugely important.  We feel blessed that he’s been able to develop speech in the way that he has — his voice is quiet and he’s difficult to understand, for sure, but compared to other kids with muscle disease, a trach and a vent, etc, he’s doing remarkably well.  This is what allows him to fulfill his desires and needs: he tells us or his nurse things — or rather makes explicit demands — and we do what we can to make what he wants happen.  For example, he often has to tell us to “pick up” his arm if it’s stuck in a position that won’t allow him to hold a book.  (We should mention that like any kid he makes some unreasonable or ridiculous demands so we don’t always comply!)

If independence is the goal of many people with disabilities — and indeed a rallying cry of the disability rights movement over the last few decades — than what does it mean for someone like Lucas who will always be dependent on those around him?  Many people with disabilities consider themselves independent if they can do most things on their own but require a personal assistant to bath, etc.  But Lucas needs us or a nurse for much of what he does, including keeping his airway open so that he can breathe.  Even when he finally gets up and running in a power wheelchair he’ll still have someone tagging along right behind him at all times; how strange to think about spending your whole life within earshot of another person.

Last year I read the amazing memoir Boy on the Moon by Ian Brown (Krista is reading it now) and was struck by our fortune in terms of how Lucas’s disability has manifested.  Brown writes about his son who was born with an even rarer genetic disorder than MTM which leads him to be non-verbal, have severe developmental delays, and do things like punch himself in the face repeatedly.  The life of he and his wife during their son’s first years is so much more difficult and gut-wrenching than anything we’ve been through.  It’s a dangerous game to get into a hierarchy of disability challenges, but sometimes you can’t help it.  While we often wish that Lucas were just a little bit stronger so that he could hold his head up on his own (like most kids with MTM) at the same time we constantly appreciate his ability to communicate, his intelligence, and his fun-loving demeanor.

At this point we’re used to being Lucas’s arms and legs — in fact we delight in being his caregivers — but we still wish to god he could go pick up books himself sometimes.   We mostly live in the here and now of Lucas’s life, because contemplating what all this means for the future is too hard to really think about.  And because we’re too busy being awed everyday by Lucas’s joy, curiosity, and playfulness in the face of such huge challenges.

On Sunday I spent the entire day alone with Lucas — Krista is out of town — and though I got tired at times, struggling to find fun things to do, I also smiled a lot, and marveled (again!) at what a great kid Lucas is becoming.