Lucas Camilo

It was beautiful in the Washington DC area this weekend, so we decided to take Lucas out to the fall festival at the dairy farm that delivers our milk and yogurt each week.  It was a bit of a last-minute decision, so we had no idea how wheelchair accessible the event would be, but we crossed our fingers and drove with our friends Max and Jess out into the beautiful rolling hills of Maryland to say hi to the cows.

The event was big and there were plenty of activities that we didn’t join in on, but it was fun to show Lucas some real farm animals.  Despite his major enthusiasm for cows in books and cows in songs, for some reason the live cows didn’t excite him much. (He was unimpressed even before the calf tried to eat his stroller.)  But he loved the stall full of baby pigs, and he was interested in the ponies.  He requested a “dog” at the face painting station, and he surprised us by actually allowing a stranger to paint his face.  But Lucas’s favorite part of the festival was definitely the live bluegrass music.  The minute we got to the festival he started asking to dance, and he managed to boogey through much of the few hours we were there.

Despite logistical challenges of maneuvering Lucas around a farm, there were many sweet moments.  Max and Jess took care of us — getting food and chairs and anything else we needed — so we could take care of Lucas. (thanks!)  Maybe because families were caught up in the myriad of farm activities, it felt like people stared at us less than usual. And yet, we remain conspicuous.  People made room for Lucas to get as close to the animals as his chair would allow – which surprisingly is not always our experience.  One of the guys in charge of the pony rides brought one named “Friendly” over to Lucas so he could see her up close.  There was a moment later when we were trying to negotiate getting Lucas’s chair up into the barn and our four hands weren’t quite enough to do it smoothly, and suddenly another set of arms appeared and helped us lift Lucas’s chair exactly where we needed it.

And at the end of the day, one of the older folks who had been watching the band and watching us walked over to us.  Whenever someone comes over, we get ready for questions and prepare to tell them about Lucas and our equipment.  Which is fine — if we can help demystify childhood disability and medical equipment for people, that seems important enough to answer people’s questions as best we can.  But this man just warmly shook our hands and told us he could see how good we are good to Lucas.  And that was all.

"Some cuts don't heal".... "Our homes not nursing homes"

Last Wednesday we were excited to head downtown for the Medicaid Matters rally organized by the direct-action oriented disability rights group ADAPT.  In the days leading up to the rally ADAPT did sit-ins in various Congressional offices demanding no cuts to Medicaid and an end to the “institutional bias” that allows for people to receive coverage in nursing homes but not in their own homes (despite the fact that the latter is much more cost-effective).

Unfortunately, Lucas was feeling sick so we couldn’t make it to the rally in the end.  Still, we’re big fans of ADAPT and it was exciting to see pictures of so many people in wheelchairs taking part in a mass action.  Lucas hopes to make it out next time.

Senator Bernie Sanders summed it up well at the rally:

Right now we are engaged in one of the great political struggles in the history of this country.  On one side we have the wealthiest people in the country who have never, ever had it so good.  On the other side what we are seeing is 16% of our people unemployed and 46 million Americans living in poverty, and that number is growing everyday. So the issue we have to deal with right now is to determine whether [our] government is there to represent all of the people and not just the wealthiest and most powerful.  In America today… we are the only nation in the industrialized world that does not guarantee health care to all people as a right.  Not only should we strengthen Medicaid, not only should we makes sure that children and people with disabilities and low income people are not thrown off Medicaid, we should expand Medicaid and Medicare so that every person in this country regardless of income has health care as a right…

The issues around Medicaid cuts really resonate for us as some of Lucas’s health-related expenses are not covered by our primary insurance.  Having spent the first three-months of his life in the hospital Lucas automatically qualified to receive secondary insurance through DC’s Health Services for Children With Special Needs (HSCSN), a Medicaid-funded program (even though our income is well over the cap).  However, as we plan our move to the Northwest it’s unclear whether Lucas will continue to receive such secondary insurance.

Of course, the possible cuts that Republicans are pushing for (and which many Democrats seem all too willing to accept) will fall mostly on the backs of the poor and working class.  For that reason, we’ve been involved in campaigns pushing for the wealthy and corporations to pay much higher taxes.  This is the only way for the future which Senator Sanders speaks of – where all people are provided with the health care they need – to become reality.

Burke has been working on a series of yet-to-be-released short videos about Medicaid, Medicare, and Social Security that use personal testimony to convey the importance of these programs.  In the clip below, Patricia talks about the enormous impact of Medicaid on her family’s quality of life:

Meanwhile, last Friday was the Washington DC reading for the Rad Dad book (pick up your copy today if you haven’t already – it makes a great gift!)  We were really happy to see a lot of our friends at the event and it felt good to share Lucas’s story publicly.  Burke discovered that his piece “Upside Down Lucas” is not an easy one to read out loud since it’s rather emotional.  However, it does well to express the challenges of disability in a way that (hopefully) encourages others to think more deeply about making the world an accepting place for all people.  In that way, it feels important that the book includes an essay about special needs parenting, and so far it has gotten a good response.

We hope to someday add a bunch of parenting, special needs, and disability rights resources to this blog so any suggestions you may have would be much appreciated…

As we blog less frequently, the list of things we could report on starts to pile up. We took Lucas on a big trip into the Shenandoah woods with friends this past weekend. We’ve been going for more walks around the neighborhood as the weather cools. Lucas is learning his colors, and if you ask him what color the trees are, he’ll say “neen.”  One of Lucas’s most devoted blog followers (besides his grandparents) was in town from California last week, and she and Lucas got to meet for the first time.

And disability has felt harder recently. It’s scary as we think about the future; infuriating when people gawk at Lucas when we’re out for a walk; tiring as we go through our limited routine of books, blocks, puzzles, and computer games over and over and over; complicated as we relate to more people about parenting, feeling like most of our experience is happening on a different planet than typical families.

So we think we might write about all of that at some point. In fact we were thinking about writing about some of it today. And then this afternoon, after a year of HATING finger paints, Lucas changed his mind. And suddenly that seemed like the most important thing to write about tonight.

Because for about a year, we’ve tried to convince Lucas to use finger-paints. He’ll draw with markers and crayons, but that’s complicated for a kid who has so little muscle strength. He’s taken to using watercolors recently, which require less pressure on the paper, but that takes precision that he did not have six months ago. Finger paints seemed like the obvious solution – so much less precision needed, so much more color with less brush strokes. But every time we tried, just barely touching his finger to the wet paint, he’d lose it. More than once he got so mad that he turned red and set off his pulseox alarm just at the sight of one of us finger painting and asking him if he’d like to try.

And then today, Krista asked him if he’d like to finger paint. Lucas signed a timid “yes,” and he gave it a try. And then he proceeded to ask for more paint and more paint and more paper and more paint for the next hour and a half. It was awesome.

Despite the sweltering heat (which Lucas is NOT a big fan of), we’ve managed to get out for a few short trips recently.  On Sunday morning – with the heat index foretasted to be over 110 degrees in the afternoon – we packed our gear up early and attempted to beat the crowds to Washington DC’s tiny “National Aquarium.”  It’s not much more than a big basement with some fish tanks, but Lucas was totally captivated.  He did the “fish” and “turtle” signs about a thousand times, and then we tried to guess what the sign was for “alligator.”

This morning we took him to his first ever “story time” at the Mt. Pleasant library up the street.  Victor and Krista took Lucas, and they rolled his stroller right up to the circle of about 30 toddlers.  The kids (and especially their parents and caregivers) were taken aback by Lucas’s equipment at first, but we got to make a special announcement showing off our suction machine, and that seemed to be enough to calm most people’s curiosity.  Lucas doesn’t exactly love to have a crowd around him singing and clapping, so he cried through the first half of story time and pleaded to go.  But when we backed up a little and positioned ourselves where he could see the ceiling fans better, he calmed down and even made small “cat” and “duck” signs along with the story the librarian was reading.  By the time it was over a number of the kids came over to say goodbye.  Lucas’s tears had dried by then, and he even raised his hand to wave small goodbyes.

The arrival of late summer means transitions around our house.  Florence left with her family for a month in Uganda, so today Lucas is getting to know a new nurse.  His therapists are also taking vacations, so he’s had less visitors to the house recently – meaning he has more time in his calendar for people to come play or read books.  Meanwhile, tomorrow is Burke’s last day at Center for Community Change, the (day) job he’s been at for the past year and a half.  Finally, Krista is off this weekend to Minneapolis to attend the MTM-CNM Family Conference.  We’ll be sure to report on that adventure next week.

Today was another beautiful day in Washington DC, so this morning after physical therapy Krista and Lucas went outside to bask in the sun… and play and study.  Krista is nearing the end of her yoga teacher training program, so she took flashcards out to practice her Sanskrit.  Lucas, meanwhile, is more and more motivated to practice sign language, so he took his new baby ASL flashcards and went through the deck signing “swing” and “book” and “more” at the pictures on the cards.  It was a very productive morning.  (Lucas also took breaks from studying to taste and kiss the cards.)

Besides giving a Lucas update today, we also wanted to share some news, projects, and interests that have our attention right now, and invite you to join us in supporting any or all of them if you’re so inspired.  We’re sharing this list in part because people have asked us if there’s a foundation or organization where they can give donations to support Lucas and children like him.  So here’s an attempt to start a list like that.

First, this past weekend was the national “fun run” fundraiser for ADAPT, an amazing national grassroots disability rights organization.  The “run/walk/wheel” event was on Sunday, and then on Monday, a group of ADAPT activists went to Congress to protest the Republican-proposed cuts to Medicaid.  They occupied the rotunda of one of the Congressional office buildings, and 89 activists were arrested.  One of their main demands is for Medicaid funding to continue to cover in-home services so that people with disabilities are not forced into institutions, which of course are more costly AND often less humane than allowing people to stay in their homes.  This issue obviously resonates very personally for us, since at one point we had to fight to get in-home services in place to be able to bring Lucas home.  So we’re excited to be supporting ADAPT (together with Krista’s yoga students who also donated to the fun run!), and wanted to invite others to join us.  You can donate to ADAPT here.

Lucas in training for Saturday's walk

This weekend we’re going out for the DC March of Dimes “Walk for Babies.”  We figured this might be a fun, accessible public event that Lucas would enjoy participating in.  (As opposed to a raucous street protest with giant horns and puppets.  We’ll see what he thinks.)  The March of Dimes does good work to improve accessibility of prenatal health care and to support preemie families.  When Lucas was in the NICU we got orientation materials from the March of Dimes, and now we’re on the Parents Advisory Council that they coordinate.  So we’ll be walking (and rolling) as Team Lucas Camilo.  You can sponsor our team online by going here.

And then there is the cause that is most directly linked to Lucas.  A number of MTM families are walking in June to raise money for the Begg’s Lab research on Congenital Myopathies (the category of disease that includes Lucas’s neuro-muscular disease, Myotubular Myopathy).   Although we generally assume that the research has a long way to go before it translates into possible treatments or cures, we’re excited that there’s some hope for treatment in the not so distant future.  And in any case, we’re happy to be supporting this walk!  If you want to learn more about the walk and the Beggs lab, go here and to donate to support myopathy research, go here.

And in news less directly related to disability and disability rights, we’ve been following the case of an experienced Virginia home birth midwife who is being prosecuted for a baby’s death at a birth she was attending.  It is a long story that you can read some about in this Washington Post article.  In the words of our midwives Mairi and Erin (who followed Krista’s pregnancy and would have attended our homebirth had circumstances been different), “Since her arrest Karen has been ordered not to attend any more births.   Already there are not enough midwives to meet the needs of women and families seeking home birth in the DC Metro area.  We turn families away every month.  Karen has attended over a thousand births.  She has been tucking mothers and babies safely into their beds after birth for 20 years.  There isn’t a midwife available to replace her… Karen faces spending the rest of her life in prison.”  Even though Lucas needed to be born in a hospital, the prenatal experience we had with midwives was wonderful.  And should we ever get pregnant with a Lucas-little-sibling, we’ll want the support of home birth midwives again.  Mairi and Erin suggest that to support Karen and midwifery more generally it’s important to counter negative depictions of midwives with positive stories.  So if you have those, you can share them here and here.  And we’ve also donated to Karen’s legal defense fund.

And finally, if you asked Lucas how you could support him, he’d make two fists and enthusiastically rotate them back and forth in his patented sign for “swing.”  So if you’re around DC, come over and give Lucas a push!

The other day Krista saw a little boy running around the coffee shop and it occurred to her that he was about the same height as Lucas.  She asked his mom how old he was and the answer was 2.

There are two things that were immediately striking about this: first, that a kid Lucas’s size is running around (quite a contrast to Lucas who has never stood, or even sat up on his own for that matter); and second, that Lucas is a tall dude for his age!  Lucas now weighs over 25 pounds and is 33 1/2 inches tall.  That’s almost 3 feet tall, and he’s only 16 months old!

The question “what’s Lucas up to these days?” is always a tough one to respond to in a brief sentence, but these days we’ve got a pretty good stock answer: “he’s, uh, growing.”  Sometimes we wake up on the morning and go to give Lucas a morning kiss in his crib and it seems as if he’s added another half inch during the night.  In fact, he’s nearly grown out of his second crib in the back room – there are only a few inches of space left before both his feet and the top of his head will be touching the respective ends.

All of this seems well and good – every parent loves to see their child grow, right? – except that as we previously mentioned, Lucas can’t sit up or move his body much as all.  While his fine moter skills are developing remarkably, his ability to twist his torso, to shift body positions or roll over, is pretty much non-existent.  His muscle tone is so low that he needs braces and props to hold him in any position other than lying flat on his back or tummy.

Under these circumstances, Lucas’s rate of growth isn’t all that exciting; rather, it’s downright scary, at least when we imagine ourselves years down the line.  The taller Lucas gets the more chance he’ll have of developing scoliosis later in life; the longer his torso gets, the quicker he grows out of his special braces and chair, meaning that he needs new ones.  Mostly though, it’s his weight gain that gets us thinking about the challenges of the future.

Already, picking Lucas up is a complicated ordeal, and at this point Victor and Florence (Lucas’s nurses) are the only people other than us who really feel confident doing it.  For example, when you put a single hand under his waist and lift, his butt goes up but the rest of his body stays on the ground.  His arms fall back behind him, his legs droop, and if you don’t have the other hand firmly behind his neck then you’re in big trouble.  All of this is compounded by the vent tubing connected to his trach and the pulse-ox monitor probe running from his toe, which add an extra layer to an already challenging maneuver.

And yet, lifting Lucas is not only necessary but often a total joy: when Lucas is in a good mood there’s nothing he enjoys more than  getting swung around the room,  or having his head flipped head back into “upsidedown Lucas” position, or laying on someone’s chest for a good snuggle session.  It wasn’t long ago that we could easily pick Lucas up and do all this stuff, and we can still pull it off, but 25 pounds of a very floppy body is different than 15 pounds.  And it’s hard to imagine 35 pounds.  Or 50.

The reality is that Lucas will may ever be able to walk, and he probably won’t be able to sit up straight on his own anytime in the near future.  Playing with him in the ways we now do will get more challenging as he grows.  Moving him from place to place is also going to get a lot harder.  Burke has recently committed to stretching his back more and starting to strengthen his abdominal muscles in order to better carry Lucas.  He jokes that he’s going to have to get a personal trainer soon in order to get all of his Lucas-lifting muscles in better shape.  And the thing is, it’s not really a joke.

There’s not much we can do about Lucas growing.  He’s not at all chubby right now and we’re certainly not going to starve him.  In general, being tall is a characteristic of people with Myotubular Myopathy, one of those freaky things about this disease that seems to doubly punish kids like Lucas: not only is this genetic mutation going to dramatically inhibit the development of your muscles, but it’s going to make your body really long as well so that moving around is that much more difficult.

We don’t mean to complain about this, nor to we want anyone to feel sorry for Lucas.  This is just a reality that we’re coming to terms with and which is important to share as we enter into subsequent stages of Lucas’s development.  There are so many amazing things that he’s doing these days that we (usually) can’t help but focus on the positive.  But every pound he gains and every ½ inch he adds to his height gets us a little close to that day when it won’t be so easy to pick Lucas up and dance around the room… and that’s scary.  Because dancing around makes Lucas happy.  And so does bouncing on daddy’s knee as he cruises in the make-believe choo-choo train.  We love Lucas so much that seeing him happy at these moments is the greatest thing in the world.  So we’ll cherish each minute, and look forward, sometimes anxiously, to new adventures that he can take part in even as he grows bigger…

The past week was great for Lucas and for us, and we’re finally getting a chance to sit down and write about it.  The highlights were an extremely informative (and long!) visit to Children’s on Thursday, as well as the “My Baby Rides the Short Bus” book event/community gathering featuring parents of kids with special needs that we helped organize this past Saturday.  In between Lucas came down with a cold (and got over it quickly); our friends Jesse and Alessandra visited us from New York (and announced they’re expecting a baby!!); we escaped and went out on Friday night together for a fun Cabaret fundraiser for DC Jobs with Justice (complete with hand-dancing lessons); and finally, we decorated our first Christmas tree with Lucas.

Our long day at Children’s last Thursday is worth recounting because it featured one of the best visits with a team of medical professionals that we’ve ever had.  After an appointment with the complex care doctor — who helps tie all of Lucas’s specialists together and keeps on top of his overall health plan — we went downstairs to the MDA clinic.  It took a while to get Lucas settled in and record the requisite vital signs (he’s now about 33 1/2 inches long!) and by the time the team of doctors and therapists arrived Lucas was napping in his stroller/chair.  We started talking with them and soon Lucas woke up, and fortunately he was in a good mood and ready to perform.  The physical medicine doctor and researcher had never met Lucas before but presumably had read lots of reports about him.  They were genuinely impressed at how well he is doing, and in particular, extremely positive about his cognitive development and potential for interaction and communication.  The doctor said almost immediately “get him an i-pad!” and later handed us a prescription.  It’s mind-blowing to imagine that these hip computer things might help our baby tell us what he wants and feels, but since we’ve heard success stories from other parents, we’re willing to try.

The doctor and physical therapist had lots of other great ideas.  Maybe most significantly, they helped adjust Lucas’s stroller/chair.  Since we got the chair back in July we’ve struggled with it.  His big head makes him slump him down and either get spaced out or appear uncomfortable.  These doctors, though, looked at the angle of his hips and called in a technician who loosened a few screws and opened the angle of the seat slightly.  We put Lucas back in the chair and he actually smiled!  Suddenly he had more stability in his torso, meaning more room for his lungs, meaning more oxygen and more energy.  All five of us stood and ooohed and aaahed at how great he looked, and at the miracle of a more space in his torso bringing so much alertness to his face.  (Note to any slouching readers: this applies not just to Lucas, but to you, too!  It is good for all of us to sit up straight, and not take that space for our lungs for granted.)

The great ideas and positive reinforcement around Lucas’s growth and development went on for over and hour.  We then eventually we met the new neurologist who’ll be working with Lucas, a young doctor who showed interest and willingness in do research around Lucas’s disease.  By the time it was all over we had been at Children’s for six hours without lunch and we were all ready get home.  But unlike past visits when Lucas spent the day at the hospital getting poked, prodded, measured, and interrogated without getting much in return, this time we went away excited, with dozens of new ideas.

Two days later, we hosted the “Baby Rides the Short Bus” event.  About 45 people — many of whom were our wonderful friends! — turned out on a cold Saturday evening to listen to five parents tell their stories of raising kids with disabilities.  Krista welcomed everyone and introduced all the parents who would share.  Jen Silverman, co-editor of the book, came from New York and opened the stories section of the event by reading from the book.  Then Tricia, a mom of 2 and blogger from Baltimore read from her blog.  Then Jane, a mother of five from DC and activist with Empower DC, told about her son, Andre, who sat next to her.  Then Burke read from our blog (and got the whole crowd teary-eyed), and then Doreen, mother of two and director of the local affiliate of Family Voices, talked about her family and about the challenges of discrimination in schools in Washington DC.  We then opened the floor and more parents of kids with special needs shared their stories about ignorance, discrimination, fighting for their kids, and the joys of raising unique families. We ended with a potluck dinner and time for people to meet and share information.

It was definitely humbling for us to share the stage with parents who have so much more experience than us, and relieving to be in a space where we could talk about how hard it can be to people who know what we’re going through and, as much as anyone can, what may lie ahead for us.  We were also really happy to learn about new resources — including Jane and Doreen, the two other local parents on the panel.

One of the amazing moments near the conclusion of the event was when one parent asked the crowd how many people were parents of kids with special needs (a few) and how many were friends of parents who have kids with special needs (a lot).  She said, “Wow.  I don’t have any friends left who are parents of ‘typical’ kids.”  She said that most of them can’t handle her family, and they get embarrassed or impatient when her kids act “strangely” in public.  So the success of the event wasn’t just making connections with other families who are facing similar challenges as we are.   Ultimately we all want our kids and families to be loved and embraced by everyone, so it was powerful to have so many friends and strangers there to listen to our stories.

Lucas has had quite an active social life lately, making frequent trips from our home despite the brisk fall temperatures.  And he’s unfazed by the many steps we have to go through to get him packed up… nor do the controversial new TSA regulations seem to bother him!  Ok, so we haven’t been through an airport yet with Lucas, but in the last few weeks we traveled upstairs for a great thanksgiving dinner with our neighbors, took multiple trips to our friend Sha’s house up the street, and made our way to a potluck dinner next door.   We’ve also had more visitors lately – close friends and family as well as people meeting Lucas for the first time.

It’s fun and exciting for us, but at times Lucas seems less enthusiastic about it.  In fact, he can become really shy when meeting new people.  It’s not an easily recognizable shyness; anxiety about strangers causes most kids to cry or run for their parents, but Lucas’s reaction is to appear totally spaced out.  People often end up saying, “Poor guy! He looks like he’s ready for a nap.”  One look at his pulse-ox monitor proves that to be false, and it’s especially frustrating because we’ve probably recently talked up Lucas’s new-found expressiveness, or his ability to vocalize over the vent, or his expanded arm movements.   (We should add that Lucas much prefers laying down to sitting up, so the fact that we often try to sit him up to meet people probably adds to his awkwardness about social situations.)  “He’s just not in the mood,” we say.  “But you should see him when he is.”

Two weeks ago we were excited to meet in person a family who we had previously connected with over the Internet.  Their daughter is about Lucas’s age and also has a tracheostomy.  There are dozens of quite unrelated reasons babies get trachs — Lucas has it because of muscle weakness, others because of lung problems, others because of brain or nervous system problems.  So it was a little bit startling for us to meet a little girl who has a plastic tube in her neck similar to Lucas’s and yet see that her family’s challenges are very different from our own.  Matt and Amy arrived with Brianna in their arms, not in a heavy stroller and unattached to a vent or monitor.  She crawled around our apartment, noticing interesting toys, grabbing them easily and shaking, studying, and tasting.  She could even pull herself up to a standing position.

The meeting and other recent interactions highlighted for us the extra uniqueness of our already unique situation.  Besides the trach and vent (Lucas’s most obvious and visible differences) he also remains very floppy.  He still can’t roll from his back to his side, or lift his legs off the ground, or hold his head up in the middle when he’s lying on his back.  He has very little head or torso control at all.    It’s scary to wonder if he’ll ever be sit up comfortably, without braces, for an extended period of time.  And sometimes this combination of his shyness around others and his extreme low muscle tone make for an awkward situation out in public.  All the more reason that we are appreciative of the amazing compassion, patience, and understanding many of those around us show for Lucas in his special situation.

Lucas has been waking up in a good mood lately, singing and laughing from the moment his eyes open.  The things that are so difficult vanish momentarily when Lucas grins with delight and waves his suction tube in the air.  We are grateful for it all — the bliss, the challenges, and the people who are loving us and walking with us on this journey.

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The writing class Krista has been taking ends this week.  We appreciate everyone who reads our writings on this blog, the thoughts sometimes still in formation when we post them.  Here’s a poem Krista wrote, another work in progress.

Cradling My Precious Son

I sit, holding you in my
lumpy lap.  You tell me,
scrunched face, head pushing back,
you are tired.

Everything
is uncomfortable

I plead, silently, for you to
find a place on my lap
that is acceptable.
I lift your heavy head, droopy arms,
sagging midriff,
and tilt your weight from
my left arm to my whole chest.

You lean in,
tell me – without sound –
you want your thumb.
I slip my hand
around your body,
under your soft elbow.
And in one fluid movement,
as if our bodies were one again,
I help you bring
your hand to your face.

As if that movement were one
we both had always planned on –
me helping you lift your hands.

Thumb in mouth,
eyelids immediately heavy,
you say thank you
as you submit to sleep.

And I feel the surge of the
deepest pleasure of motherhood,
oxcytocin and love and spirit and God
all filling my body at once.
All cradling my precious son.