Lucas Camilo

It’s true – I (Krista) was gone for four and a half days to attend the U.S. Social Forum last week.  Although I worried that I wouldn’t survive being away from Lucas so long (or that god forbid I’d like being away), it turns out it wasn’t nearly as hard as I thought it would be.  It certainly helped to be surrounded by wonderful people, constantly learning in workshops and reconnecting with old friends during the breaks.  And it helped that Burke gave me detailed Lucas reports every time I called to check in.  I went to the forum in part to reconnect with political activism and in part to connect with and learn from like-minded people about disability.  I thought that meeting other people with disabilities* would help give me insight into Lucas’s experience.

The first workshop I attended was called “Beyond Access.”  It was led by two people who are activists and teachers and who have disabilities (one of the facilitators even had a trach!).  The 4-hour workshop was meant to push people who are already part of the disability community – people with disabilities and their allies – to think beyond some of the traditional frameworks and approaches to disability.  The workshop facilitators showed images to get the group talking about what they called the charity model, the medical model, the administrative model, and the social/movement model of disability.  In each of the first three frameworks, people without disabilities (parents, politicians, charity board members, doctors, social workers, etc) are in positions of power over people with disabilities.  People with disabilities are seen as passive victims of their disability or disease, people who are sick and need fixing, people to be pitied, and people who need decisions made for them.  It is a harsh critique for anyone who’s grown up in this culture, since we’ve been taught that charity, medicalization, and services are ways to help, not harm.  The facilitators contrasted these models with a movement model, one in which people with disabilities are on the boards, in leadership and defining priorities for change.

We then went on to look at an expansive vision of a movement that works toward profound transformation of our society, institutions, and culture.  Historically disability activists have worked to secure legal rights and access through legislation like the Americans with Disabilities Act (ADA), which have led to significant changes in society in the past 20 years.  (A mother of a 26 year old with disabilities said to me “it’s a good time to be born with disabilities.”)  However, people talked about their experiences with the limitations of legal rights.  A few people talked about the challenges of bathrooms.  As far as people in the room understood, the ADA has language saying public buildings need to have “reasonable access” for people with disabilities, but the legislation does not explicitly mention or cover care givers or assistants or spouses of other genders who need to go into the bathroom to assist.  A workshop participant who uses a wheel chair talked about facing arrest in the Smithsonian museum when her husband assisted her in the bathroom.

The facilitators led us through another activity to highlight they ways classism, racism, homophobia, prisons, war, and ableism overlap and intersect: the fact that unemployment is incredibly high for people with disabilities, that people with disabilities are still often institutionalized against their will, that children of color with disabilities are often much more marginalized in the public school system than their white peers with parents who have more time, lawyers, and power to advocate for their children’s rights.  In small groups, we envisioned a movement that fights against multiple injustices at once – that fights racism and ableism and strives to build a radically new culture where nobody would imagine calling the police when a man helps his wife in a wheel chair to the bathroom.

It is a radical vision, and I admit that sometimes I feel cynical when asked to envision a world that feels so far removed from where we are now.  But it was different for me this time.  I felt really inspired meeting so many different people working toward this vision:  a group of young people from North Carolina who formed a coordinated pod of radical personal assistants for folks with disabilities, sharing a vision of empowerment; a man with cerebral palsy who is an advocate for independent living, peer support, and self-esteem for people with disabilities; a man from Michigan who survived a shooting 13 years ago who was in a coma, used a trach, ventilator, g-tube and wheel chair for years, who found strength and God in his ongoing rehabilitation; a mother whose children are deaf and who has taken to speaking loudly and with sign language everywhere she goes as she insists the world learn to sign; another mother of a son with disabilities who spent the whole social forum coordinating access for all; her artist son with Downs Syndrome who makes T-shirts that say “Labels are for Jars” and “I [heart] My Life.”

These complex conversations certainly didn’t give me any easy formulas for being a mother and ally to people with disabilities.  But it was significant for me to get over my fear of exposing my own ignorance and prejudices and simply talk with people.  And in the end I left feeling incredibly relieved having met such a warm, loving, inclusive community of people that can be role models to Lucas, Burke and me.

* About language: I’m learning too about naming for the community of people who have clear physical and cognitive differences from the mainstream, from those of us who identify as (temporarily) able-bodied.  There is crippled, disabled, handicapped, physically challenged, differently abled, special needs, medically fragile… and more.  Most people at the social forum chose “disabled” as a broad, inclusive identity.

Burke managed not to burn the house down while Krista was gone, in part because family and friends were checking in on him and Lucas throughout the week.   Plus, uncle Isham came by on Friday night with a pizza and some other reinforcements just as the last of the food was running out.

All in all Lucas had a good week and Burke enjoyed getting to spend more time than usual with him.  With the thermometer in DC consistently hitting the upper 90s (over 100 degrees with humidity!) it was nice to hang out inside our air conditioned basement and play with Lucas, while getting some work done during his naps.  On Thursday and Friday nurse Florence stayed with Lucas as Burke went off to the office, and on Saturday our friend Amy from the Washington Hospital Center (who was working in the NICU when Lucas was born) came by for a few hours to visit.  Meanwhile, Burke’s walkie-talkie-baby-monitor system allowed him to get outside occasionally to water the plans and turn the compost.  Since these days Lucas loves watching hands, faces, and (especially) stuffed animals from a distance, Burke also rigged up a flying elephant in the middle of the room that provided endless fun and distraction.

Krista returned triumphantly from Detroit on Sunday and Lucas was very happy to see her, smiling away throughout the afternoon as they snuggled and played together.  He also got in a much needed scrub and you can see from the picture that Lucas has pretty much outgrown his favorite whale bath.

Krista has a lot of reflections coming back from the US Social Forum and will share some of them over the blog in the coming days.  In the meantime, we appreciate the comments around the MTM articles that we posted last week.  We’re still researching and thinking through the complexities of the world of muscle disease and disability but we do plan to grapple with many of the questions that people put forward.

Krista hit the road this morning for the US Social Forum in Detroit.  She’ll be helping to lead a CISPES workshop as well as taking advantage of the amazing breadth of organizers and activists in attendance to learn about health, healing and the disability rights movement, among other things.

Back at the home front, Lucas and Burke are already missing mom but are excited that she has the opportunity to make the journey.   They’re also looking forward to a little boys time.  Lucas inaugurated Burke’s day off at home by peeing all over his leg as they watched the US world cup game this morning.  The guys will be holding down the fort until Sunday (with help from nurses and friends), by far the longest that Krista has been away since Lucas was born.

Meanwhile, there have been some recent stories in the news about children with MTM and some small advances in research around treatments.  We thought we’d share them to give an idea of the (slow) progress being made towards improving the lives of people living with MTM.  Though we know that each child with MTM is distinct, it’s still helpful to hear some of the stories of families that have been facing this challenge for a lot longer than us.  To that end we’ve also been in touch with more MTM parents lately as we continue to research and explore the various issues related to Lucas’s muscle condition.

Methuen boy’s journey inspires others to walk

MTM: Unlocking Muscle Fibers to Myotubularin

A Family’s Donation to Research Leads to National Funding

Son of former Jaguars player inspires family and friends

Happy Father’s Day Burke!

Although Burke and I usually both look over blog posts before posting, this one is going to have to go live without Burke’s approval.  Burke is a bit of a skeptic when it comes to holidays that corporations use to sell us stuff.  Which means he is opposed to most holidays (or claims to be), including Fathers Day.  But Burke is such an amazing dad that Lucas and I couldn’t let the day pass unnoticed.  One day Lucas will be able to tell you himself what a great dad he has, how warm and loving and positive and attentive his dad is.  For now he just has good shirts to communicate his love.

A friend and long-time feminist leader in El Salvador included Burke on her “feliz dia de los padres” email greeting.  She dedicated the email “to all the men who have responsibly taken on their role as fathers and who share the work of parenting – and building the future – with their partners; to the men whose lives and practice, little by little, are breaking with centuries of discrimination and inequality.”  Wow.  Breaking with centuries of discrimination and inequality is a pretty serious compliment.

But I agree with her – Burke is one of the men of our generation who are reshaping fatherhood so that the work and joy of parenting are really shared between parents.  I’m tempted to list everything amazing that makes Burke the most beautiful dad and partner-in-parenting I know, but the list would be too long.  And I’d still miss things.  So for now I’ll just stick with saying that I am so happy to be raising Lucas with such a great dad.  (And I’ll tell you later which one of us usually gets up when Lucas needs us at 3 in the morning…)

And happy Fathers’ Day to all the dads we know.  To Burke’s dad – Lucas’s Papa – Michael Stansbury.  Although I wasn’t there to see Michael as a dad to little Burke, from what I hear he gets a lot of credit for modeling being an incredibly dedicated, loving, and involved father.  And I think about my dad today.  He died 9 years ago, but I’ve told Lucas all about him and I try to channel the huge love I know he’d have had for Lucas.  And finally happy Fathers Day/Solstice/Sunday to all the uncles and aunts and ti@s and friends and neighbors who are part of raising kids and building the future.

Lucas was weighed at our latest doctor’s appointment yesterday and believe it or not he officially passed the 20 pound mark.  Remember, this is a little guy who was born at just over 4 pounds and actually dropped down to 3 pounds 12 ounces before turning the corner.  His growth over the past five months has been especially impressive… and not just his weight, which is still under the 50th percentile for his corrected age of 8 months (since he was born 2 months premature).  Rather, it’s his height that is most astonishing, coming in at about 30 inches yesterday.

Being long is characteristic of kids with MTM so it’s not that surprising.  But we actually worry sometimes that he’s growing too fast, since more weight can mean more difficulty moving for a guy with such low muscle tone, while his extraordinary length raises concerns about the possibility of scoliosis down the line, since he still doesn’t have the strength in his trunk to hold up his growing body.  In part for that reason Lucas was fitted for some body braces on Thursday that will help with his posture, trunk strength, and by extension, breathing.

For now we’re not too worried about the dramatic growth, mostly just amazed at how much Lucas has changed – in lots of ways – since those scary early days when he was about as skinny as a Popsicle stick.  Meanwhile, Lucas and Rafi got to spend some more quality time together the other day, producing this hilarious moment:

Lucas’s first party yesterday was wonderful.  It was HOT, but we set Lucas up in his shady “zen garden” and he did great.  The whole afternoon was fun, but a definite highlight was Lucas meeting Rafi, our friends’ Daniella and Gabe’s son.  It might just be the cutest thing ever.

And here’s one more.  This photo is actually from last weekend, but it is in the same genre of cutest-ever moments in our lives.  This was the second meeting of the Camilos: Lucas Camilo and Camilo Sandoval-Moshenberg.

Lucas is growing out of his car seat and stroller so on Monday we went into an adaptive equipment clinic to get recommendations for replacements. We’d seen a few stroller cushion inserts for low-tone kids online and imagined we’d get something like that for Lucas. Instead, the adaptive equipment people rolled out what they said is by far the best option for Lucas. And it looked like a small wheelchair.

If there are instructions somewhere for picking out your baby’s first wheel chair, we haven’t read them. How do we know if he really needs this much technology?  Should we trust these people who have never met Lucas before?  How do you deal with the complicated mess of feelings when you notice not wanting the medical equipment that will likely make your baby feel most comfortable? Especially when just the night before you scoffed at the marketing pitch for another stroller that bragged it was not “medical” looking. We won’t be those parents, we thought.

We still have a while to adjust to the idea — because the “stroller” qualifies as medical equipment our insurance is supposed to pay for it, but it will probably take them weeks or months to make a determination about how much they’ll cover.  And to be honest, the one they recommended looks like a stroller/wheelchair hybrid, and Lucas’s brand new one will probably be nicer than the beat-up old model chair they have at the clinic.  But as parents who check out other kids’ strollers as we walk around the neighborhood, we can be pretty sure that people will notice Lucas’s stroller as different.  There are other issues to consider related to practicality, but ultimately its the outward display of “differentness” — putting your 10-month old in a device that looks a lot like a wheelchair — that makes the decision an emotional one.

Meanwhile, we’re getting ready for Lucas’s first ever post-partum party (unless you count his welcome home party, which Lucas couldn’t attend because he was still in the hospital).  A year ago we celebrated our commitment to each other, to our relationship and community, and to our then baby-on-the-way.   We decided to use the anniversary as an excuse to throw a potluck, and it’s definitely a risk.  A lot of our friends in Washington DC haven’t seen Lucas for a while, and Lucas in-person is different than blog and photo Lucas.  He’s still so floppy he’s hard to pick up.  He sometimes needs us stop everything mid-sentence for a suction (and, as we’ve mentioned before, suctioning is a loud ordeal).   Lucas moves very slowly, so it takes time to get to know him — more time than a busy potluck will provide.  And it’s supposed to be 93 on Sunday, and Lucas tends to space out when it gets too hot.

So while we’re a little nervous about (re)introducing Lucas to the world, we’re also encouraged by the fact that Lucas has been making good, steady progress lately.  His arm movements, though still very slow and deliberate, are increasing in their “anti-gravitational” nature, and he can regularly reach his entire arm off the bed to grab at something over head.  He also continues to smile a lot when he’s in a good mood and is increasingly interactive with the things around him, including people.  He may not put on his best show come Sunday but we trust that our friends will be patient with Lucas as he expresses himself in his own unique, deliberate way.

Yesterday we spent three hours at Children’s hospital with Lucas as part of our first visit to the Muscular Dystrophy Association or MDA clinic.  The organization made famous in part by the actor Jerry Lewis is the largest national funder of research and support for children with neuro-muscular diseases.  The clinic at Children’s involves different specialists, some of whom we already know, including Dr. Leschner who originally diagnosed Lucas with Myotubular Myopathy.  Our time at the clinic was really useful and Lucas actually seemed to enjoy it as well, smiling and showing off for some of the new doctors that he met.

First up was our old friend Dr. Leschner, who still endearingly refers to Lucas as a “little bugger” and who has followed his progress since February.  He seemed impressed with Lucas’s increased “anti-gravitational” movements, as well as his steady growth.  He listened to us talk about how things have gone over the last few months and offered a few thoughts about Lucas’s development that we’d mostly heard before.  He encouraged us to keep up the therapy sessions for Lucas, but also to know that many skills – from holding up his head to swallowing food – are things Lucas will just do when he’s physiologically ready.  Specifically, he said that it’s good to be giving Lucas tastes of new foods to keep him interested in having things in his mouth, but not to push too hard on swallowing.

Next up we met Dr. Morozova from Physical Medicine.  We liked her immediately, as we always like the doctors that start off by saying hi to Lucas and playing with him before jumping into clinical observations.  Some doctors walk into the room and go right past Lucas and immediately start flipping through his file or pulling up computer images of his ventricles as if that’s all there is to Lucas.  Of course, the thick file and the gobs of images and test results don’t begin to explain who Lucas is, so it’s reassuring to have a doctor ignore all that for at least a few moments and just hang out with Lucas.  Dr. Morozova was rewarded with big smiles and swinging arm movements and was clearly surprised at how well Lucas was doing, maybe in contrast to some of what she’d read in “the file.”

Since Lucas is growing out of his car seat and his whale bath we talked with her about getting a prescription for new equipment.  She reinforced a lot of what we’ve heard from Lucas’s physical and occupational therapists, and agreed that helping him into a sitting position for a number of hours a day would be beneficial to the development of his trunk and neck muscles.

Finally, we met with the team of genetic counselors about next steps following Lucas’s diagnoses.  Since Myotubular Myopathy is an x-linked genetic disease it’s most likely that Krista is a carrier of the MTM gene mutation.  So they recommended taking a blood sample from Krista to send off to the same lab in Chicago where Lucas’s blood was tested earlier this year.  Although we’ve assumed that Krista is a carrier of MTM, we’ve also been somewhat anxious to move forward with the blood test.  The results will have little impact on Lucas, but they will have a big influence on our decisions around Lucas having siblings one day.  The graphic on the right shows that a boy born to a mother carrier of an x-linked disease like MTM has a 50% chance of having the disease, while a girl has a 50% chance of being a carrier like her mom.  (Note that the graphic also appears to link y-chromosomes to short hair and 2 x-chromosomes to pigtails… Lucas is growing his hair as fast as possible so he can put it in pigtails and mess with such binary diagrams.)

We had done some reading on the genetics of MTM, but we learned more from the genetics counselors about possibilities, including the fact that there is a 10-20% chance that the blood test will come back negative, and that a negative result won’t totally rule out Krista being a carrier.  There are of course many more questions about the implications for our future, but Lucas has taught us that so much in this world is out of our control… and so waiting for the results of this test doesn’t feel unbearable.

Lucas was starting to get a little drowsy by this time but there was one thing left to do: head up to the lab for Krista’s blood draw.  The lobby of the lab was packed and as we waited we saw another family with a portable ventilator that looked just like the one Lucas uses.  We sidled up to them and pointed out the similarity, and pretty soon we were enjoying a great chat about vent settings, suctioning techniques, and the pains of home nursing.  It’s comforting to meet — in person, not just over the internet — another family struggling with the day-to-day challenges of taking care of a child with a tracheostomy, and there was an instant connection between the adults (Lucas and his cohort were fast asleep by this time).  It was a nice conclusion to a long but constructive morning at the hospital.