Lucas Camilo

(Krista writing) There’s no easy way to say this, but death has been very present in our lives this summer.   A friend’s mother died earlier this month after a long fight with cancer.  I’ve known Linda since I was 10, and she was an amazing woman, the kind of person who you looked forward to seeing – always welcoming and warm and easy to talk to.  When she was diagnosed with cancer years ago I understood just how unfair disease is.  It’s still hard for me to grasp that she’s not at home with the rest of her family in Florida.

And then on August 17, Saul Solorzano died.  Saul was one of the most public leaders of the Salvadoran community in Washington DC, advocating for immigrant rights and leading the largest Central American service agency in the city for over 15 years.  We had met him through our work with CISPES, and many of our friends in DC were close to Saul and his family.  Saul died in an accident – he was 49 and his youngest daughter just turned four this summer.  The Washington Post published a good obituary here.

Burke was able to go to the wake and funeral procession for Saul this weekend.   People came out with their grief and sorrow and banners and signs.  The procession was both religious and political, as people spoke prayers and sang songs from the revolutionary movement in El Salvador.

Needless to say, death strikes a sharper chord with us now.  Lucas came into our lives waving a big, unwelcome flag announcing mortality.  He almost didn’t make it in the first few days of his life.  When we brought him home from the hospital he was still so fragile that we had to be on constant alert, and more than once we resuscitated him from a scary grey-blue color back to a vibrant pink.  And then when we got his MTM diagnosis, and we learned that his life expectancy was short.  Though we try to put that aside and just live each day like any other day, inevitably the knowledge that there are no guarantees for our future has helped anchor us in the present.

Last year, when the diagnosis was still new and I was grappling more with fear of death, I read a great book called Love and Death.  It was written by a Unitarian pastor, Forrest Church, as he was dying of cancer.  In his last year of life he wrote out his thoughts about what death teaches about how to live.  And he managed to articulate over and over what so often feels cliché – that we’ll all die some day, some of us old and some of us young, and so we should use that knowledge to remember to live each day that we have fully.  And by fully, he meant embodying some of the universal religious ideas of forgiveness, love, and humility.  For him, the fact that he saw his own life as finite – that he had a very real deadline for finishing his book, as he put it – gave him all the more awe for the love and beauty he found in his family and community.

Somehow, I think if Lucas could write a book it would say something similar.  It might use simpler suggestions: Behold the duck!  Behold the dog puppet!  Behold the triangle block balanced so delicately on top of the star block!  Look some more!  Duck!  Dog!  Blocks!  All with awe and enthusiasm that has nothing to do with what tomorrow holds.  Burke and I have been following Lucas’s lead, trying to remember to feel awe wherever he points us.

Often we’re grateful for all this deep insight and profound presence, and there are days I think I wouldn’t even trade away MTM if I could because of everything Lucas – exactly as he is – is teaching us.  But there are days that I’d throw away all this insight in a heartbeat.  Mortality as a theoretical proposition is a useful devise.  Mortality meaning death and an end, or at least a major transition, is much harder.  At the Family Conference in Minneapolis last month I sat through the slide show of kids with MTM/CNM who have passed, and I walked away with a deeply aching heart, wishing not to know.  So many kids have died, so many, so young.

And then a few days ago one of Burke’s colleagues, an activist and mother to a three year old, lost her partner to cancer.  Eric and Lorena had spent many years fighting the cancer, and this summer they’d been trying everything possible to beat back the disease, keeping friends and community updated as they did.  They fought for survival within their own family while also maintaining their dedication to the larger struggles for community and social justice.  And despite everything – despite his young age, his commitment, their desire for him to get better and all the love that surrounded them – he passed.  You can read more about the life of Eric Quezada here.

In one of of the last public messages before Eric passed away Lorena wrote, “Eric’s spirit is strong, his body is not anymore—soon he will move on and continue to be alive in each of us and everything he did and the people he touched. Death is part of life.”  We never met Eric but many of our friends and fellow activists in the Bay Area worked alongside him and they are mourning his passing now.  What brought tears to us upon hearing the news Wednesday morning was the strength and courage of those close to Eric, the hope and defiance captured by the phrase “la lucha sigue” (the struggle continues).  Death is indeed part of life, but perhaps just as importantly, life — in all its inspiration and struggle — continues on after death in the spirit of those who are impacted.

First of all, we survived yesterday’s earthquake.  Apparently many people throughout the city had to evacuate, including the White House, Congress, the Pentagon, and DC public schools.  But Burke was on his bike and felt nothing, Lucas was napping and felt nothing, and Krista ran frantically back and forth between Lucas, his vent, and the door frame for the 30 seconds the quake lasted.  The upshot for us was that the roads were clogged, so we canceled a drive to Virginia and instead went for an afternoon walk in a new section Rock Creek Park.  We found kids riding horses, and Lucas was very excited to meet his first extra-large mammals up close. (Apparently the flamingos, red-ruffed lemurs, gorillas and orangutans at the zoo all knew the earthquake was coming before it hit, but the horses seemed totally unfazed an hour after the quake.)

Anyway, the bigger news in Lucas’ life is that over the weekend we threw a real birthday party for him.  Our upstairs neighbors let us use their space, and we got out the streamers, balloons, and birthday candles to do Lucas’s second birthday right.  He was a great sport and showed his “two” fingers when anyone asked how old he was.  We brought a big pile of his favorite books, and then he got more books as presents, so he spent much of the party happily geeking out on animal stories.  But we also forced him through the candle-stuck-in-tasty-food ritual (for Lucas, a banana), and sang him the birthday song.  He did really well through it all, and it wasn’t until we helped him blow out the candle and everyone clapped that he lost it.  Lucas apparently still hates clapping, and he let it be known with huge, puddley tears.  But once that was over and he got to shove the banana in his mouth (while reading books) he was back to his party animal self.

Thanks everyone for the blog/email/party-going birthday wishes.  Indeed all three of us had a great second birthday!

Believe it or not, Lucas turns two today.  The past two years of life with Lucas have been a blur at times, including great new experiences, inspiration and happiness but also major challenges that we could have never imagined when we signed up to be parents.  We talked about what to write today, having composed some longer reflections back when Lucas turned one.  But all we can think about is how much we love Lucas and are overjoyed to have him in our life.

Our friend Tom composed an awesome song for Lucas back when he was still in the NICU.  It’s called “Keep on Growing” and he recently updated it and posted it to Grooveshark for Lucas’s birthday (click the link or listen below).  It still brings tears to our eyes when we hear it, remembering back to those days in the hospital.  Today when we played it for Lucas he smiled wide and pointed to himself over and over .  Without us saying it, he knew that the song was about him.  Smart kid.

So happy birthday Lucas – we love you lots!

[audio: https://lucascamilo.com/audio/keepongrowingforlucas.mp3]

As some of you may know, a new book was just released called “Rad Dad: Dispatches from the Frontiers of Fatherhood” and in it is an essay by Burke.  Here’s a post about the book…

Last winter we organized a public event that featured parents reflecting on having children with disabilities, and out of that I was connected with the founder of Rad Dad, a small zine edited by Tomas Moniz which explores parenting ideas and ideology, mostly from the perspective of dads.   The concept was really exciting to me, for as I previous wrote, it’s been hard at times to track down other dads (especially of kids with special needs) who are a) as engaged in shared parenting as I try to be, and b) bring their politics to parenting as it relates to disability, gender roles, health care, etc.  Subsequently I submitted a revamped version of a blog post to Tomas for consideration in the Rad Dad book he was co-editing with Jeremy Adam Smith (who wrote the Daddy Shift and whom I talked about previously).  The piece was accepted and six months later the book has been released.  Check it out and pick up a copy from the publisher or your local bookstore.

As the promo explains, the anthology comes out of previous publications by Tomas and Jeremy which:

“have explored parenting as political territory… pushed the conversation around fathering beyond the safe, apolitical focus and have worked hard to create a diverse, multi-faceted space to grapple with the complexity of fathering.  Today more than ever, fatherhood demands constant improvisation, risk, and struggle… Rad Dad is for every father out in the real world trying to parent in ways that are loving, meaningful, authentic, and ultimately revolutionary.”

Both Krista and I have done a lot of writing about Lucas and the challenges/wonders of parenting a child with special needs.  The piece I submitted for Rad Dad isn’t the most complex, or amusing, or emotional thing we’ve written, but it does get to the heart of a paradox that we’ll continue to confront in the years to come: celebrating Lucas for who he is while at the same time wrestling with the “weighty” challenges of severe disability.  It’s a theme that is repeated throughout the hundreds of posts we’ve written for this blog over the last two years.  At the time I wrote the essay that became “Upsidedown Lucas” for the book I was thinking a lot about Lucas’s rapid weight gain and what that meant for him and for our future given his extremely low muscle tone.

You should really buy the book and read the whole thing but if you want you can read my chapter by finding it on Google Books (my essay starts on page 51).  Our copy should arrive today so I haven’t actually read much of the book yet myself.  But I’m especially excited that it includes an essay by Raj Patel (an amazing writer and activist around food justice issues) as well as an interview with Ian MacKaye (founder of the seminal DC punk band Fugazi who also happens to live right up the street from us).

Finally, I wanted to mention that I really appreciated the response I got from my first reflection on dadhood that we published last May on Lucas’s blog.  I look forward to continuing the discussion now that the Rad Dad book is out, and I encourage people in DC to come out to a reading on September 23 at St. Stephens Church – details coming soon.

(Krista writing)  I spent last weekend in a hotel outside Minneapolis for the second ever MTM-CNM Family Conference (that’s myotubular myopathy, the disease that Lucas has, and centronuclear myopathy, a slightly larger umbrella of genetic neuromuscular diseases).  It was amazing to meet so many people who have lived through what we’ve been through.  I was nervous about going – what will I talk about with all these strangers?!? – but it turns out having MTM in common is enough to keep conversation going for hours.   There were about 50 people in attendance including researchers, kids, adults, parents, aunts, uncles, grandparents, and friends.

One real highlight was the talent show on Saturday night.  There were kids in wheelchairs and walking in a parade of homemade hats; a whole family performing a rock ballad with pasted-on-mustaches; a 10 year old who lost his brother to CNM performing magic tricks; and a full standup comedy routine with vent and wheelchair jokes.  Jacob, a 22-year old who uses a trach and vent, showed off his pick-up lines for the ladies.  He called one of the moms up to stage and asked her to disconnect his ventilator tubing.  She hesitated, he insisted, and so she did.  He smiled and leaned into the mic. “You take my breath my away.”

And it was good to laugh, especially with families of older kids who have walked this path longer than us, and even with families who have lost their kids.  It’s good to know that even as some things get harder – like picking boys up and dancing around the room – families are still finding all the joy that we have while living with Lucas’s MTM.

A lot of the official portion of the conference was dedicated to discussing research.  There were researchers from the three main labs in the U.S. talking about where things are at and how close we are to having drugs to trial.  Dr. Alan Beggs and Elizabeth were there from Boston and presented a lot of what they had told us when we visited them last month.  Dr. Jim Dowling was there from the University of Michigan, where they’re working to pull together a mass census (or “natural history study”) of MTM and CNM, looking at how the diseases presents in as many kids as they can find, and then following them over five years to see how it progresses.   There are still many, many things doctors don’t know about symptoms Lucas has that may or may not be associated with MTM, so having this survey compiled and published will be very helpful.

The other exciting news from the UM lab is that they’re testing a drug called mestinon on zebra fish with MTM.  Mestinon is already on the market, prescribed to people with another form of muscle disease.  The drug is clearly having an impact on the MTM fish, so they’re hoping to get approval soon for an FDA trial of mestinon in MTM kids.  There are at least a couple kids with MTM who have already been taking it, and while it hasn’t gotten them up out of their chairs, their families think it may be helping them.

The biggest news was from Dr. Childers who is working with dogs who have MTM at Wake Forest.  They’ve recently tested gene therapy on the dogs by injecting a virus carrying myotubularin (a good version of the defective or missing protein) into the dogs’ hind legs, and so far the results have been amazing.  They’ve compared one hind leg with the injection to the other without, and then compared them to the dogs that don’t have MTM.  The graphs showing the change in muscle strength took my breath away – the legs that got the injection were nearly at the same level as healthy dogs.  The research is just getting started, so they’ll probably have to repeat the results many more times over the course of the next 2 years and show the dogs don’t have an immune response, but these initial results are really exciting.

(As a side note, I have to say that I have really complicated feelings about animal testing.  But I am thrilled that the research is moving forward and grateful to all the animals who are contributing to what may be a treatment or cure for MTM and CNM one day.)

Besides the formal presentations, there was tons of just talking about our kids.  I learned that being picky and at the same time extremely good-natured is a common trait of kids with MTM.  Javad, a wonderful nine year-old from Oregon, used his speech device to demand that his mom make everyone stop clapping at the welcome dinner.  (She didn’t.)  We hung out afterward, and Javad held my hand for a long time while we played and talked.  His soft, gentle grip felt just like Lucas’s – except bigger – and I felt extremely happy and lucky.  Javad studied every picture I showed him of Lucas, flipping through the album of Lucas pictures twice.

I asked for advice on various things and people were generous with their stories.  I learned that a lot of kids started using power wheelchairs at Lucas’s age, and people explained their chairs, vans and lifts.  Jacob, who’s used a power chair since he was little, warned me to watch my legs and get ready to start patching walls once we put Lucas in a power chair.  Over meals I talked with parents I’d just met about topics as varied as constipation (Lucas’s), family planning, vent settings, how to talk with kids about disability, suction machines, nursing, insurance, allergies, anesthesia, health reform, and even death.

The conference was organized by four moms, and it was an amazingly well-planned event.  Other highlights of the weekend included a whole “kids track,” with older siblings leading games and activities for younger kids all weekend long.  Organizers created a slide show, collected videos, and printed up a directory with family pictures and stories.  They had all the most important MTM/CNM researchers in the country at the event, and somehow they were all incredibly wonderful people who stuck around for the fun and bonding and grieving as much as the science. They picked a hotel that was really wheelchair and public transit accessible.  And they made sure the hotel had a lounge/bar space where we could all hang out at night.  By Saturday night – long after the talent show was over and the kids had gone to bed – we managed to get rowdy enough that people on the eighth floor of the hotel called down to the bar to complain.

Although it would have been great to be there with Burke and Lucas, I think Lucas would agree that we made a good decision not to take him – he would have been right there with Javad, giving a big “all done” sign to the clapping and non-stop chatting.  The next conference will probably be in two years, though there was talk of a west-coast gathering next year.  It’s hard to imagine, but if the stars align, we’ll probably be on that coast by then.  With Lucas in a power chair.

Krista got back from the MTM conference on Sunday and is working on a report from the conference, so look for that soon. Meanwhile, the big news today is that Lucas got stuck in an elevator!

Last week Lucas, Krista, and Victor made their first trip to our neighborhood library’s story time.  While Lucas didn’t love it, he seemed to be warming up by the end of the hour, so this morning we decided to go back again.  Burke was finishing up a phone meeting so Krista, Victor and Lucas headed out with the plan that Burke would meet them up the street.

The kid’s story hour is in a building next to the library with six or eight stairs from the front entry to the main area.  And thankfully, they have a small elevator specifically for people who can’t walk up stairs.  It’s tiny and key operated, but we made it work last week and figured this week would be no different.  But half way up, with Krista and Victor just barely squeezed in with Lucas, something on his chair got caught and the elevator stopped.  And no matter how many times Krista and Victor turned the key and pushed the buttons, nothing moved.

So we shouted, and nice people from the library came.  Since we weren’t actually in their building, they had to call other people, and those people didn’t answer their phones.  Meanwhile, it got hot.  Lucas started giving the frantic “go” sign, and Krista tried not to look up and take in the smallness of their space (though fortunately the elevator shaft actually opened up a few feet before the ceiling, so the people outside could be heard). Victor doesn’t like the heat to begin with, and the mugginess made sweat gush down his face, though he insisted on fanning Lucas instead of himself the whole time.

After about 10 minutes with no sign of anyone who knew what to do, Krista asked the nice staff to please call Burke and call 911 (neither Krista nor Victor’s phones were working).  As calmly as possible she shouted to the people outside that Lucas had medical equipment that would require some serious acrobatics to use should there be a breathing emergency inside.

Someone called the fire department while someone else called Burke and left him a message.  Fortunately Burke got the message quickly and jumped on his bike and raced to the library a few blocks up the hill.  We were imagining how to pass Lucas out of a stuck elevator if the fire department busted the doors down, but fortunately it didn’t come to such drastic measures.  By the time the firefighters walked in with their break-down-the-door tools, someone had found the emergency switch (apparently kept behind a panel requiring a screwdriver to access), and Krista, Victor, and Lucas were slowly lowered back down to the ground floor.

Lucas really only lost it when the elevator started dropping — maybe because he realized story time was at the top of the elevator, not the bottom.  When they opened the doors Lucas was surrounded by six looming firefighters — many a toddlers’ dream come true.  Unfortunately Lucas isn’t into fire fighters, so he wouldn’t even give them a full thank you.  He just said “go” until we got him out of the steamy building and into the fully air conditioned library next door.