Lucas Camilo

(Krista writing)

I’m a bit obsessed with reading about disability these days (please keep recommendations coming!)  I just took a break half way through Far From the Tree, the giant brick of a book based on the author’s 2000+ interviews with parents of children who are “different.”  The parents’ stories of allowing themselves to be transformed by their wildly unexpected parenting journeys helps me feel like I have a tribe out there.

But it’s the political disability community – the older-guard disability rights activists, and the younger, more idealistic disability justice crowd – that talks about the experience of disability in a way that regularly blows me away.  Their poetry, theory, music, and performance resonate with my experience of parenting Lucas, but they use new frameworks and new language.   For example, they talk about this false notion in our society that disabled people are “dependent” while able-bodied/non-disabled people are “independent.”  Who said that needing help with tasks like growing your food or making your shoes counts as “independent” while needing help putting the food into your body or getting the shoes onto your feet makes you “dependent?”  Why the line?  Wouldn’t it make more sense to recognize all of our interdepence?  It makes sense to me not just for political reasons, but also because it is a view of the universe that nurtures my soul.

I write all this as a preface to my day yesterday, when things went to hell for me.  Lucas was sick.  Burke was out of town.  I won’t bore you with trying to describe how it took me all of three hours to get Lucas and myself out of bed, fed and dressed for the day, but it has to do with the fact that Lucas somehow lost all ability to entertain himself, even for 15 seconds.  He chanted “Mommy, mommy, mommy” endlessly while I prepared his food.  And while I walked from the kitchen over to his side to see what he needed.  And while I went to the bathroom.  I’d tune the chanting out, except that when he’s sick sometimes he actually needs me to clear his airway ASAP, but he doesn’t necessarily change his tone of voice from the “Mommy, mommy, mommy” chant that means he wants me to sit next to him and ask him “what kind of dinosaur is that?” about every last dinosaur in his dinosaur sticker book.

Another hard element of the morning was that yesterday was the anniversary of my dad’s death.  It’s been long enough that I don’t feel the sharp sadness every year, but since we moved to Seattle his being gone has felt a little bit more raw.  We’re so close to where I grew up – he could have been here helping us love and care for Lucas.  And to top it off, I was starting to worry about Lucas.  He’s had a lingering cold for over a week now, and while it hasn’t been too serious, it has tired him out to the point that he’s been sleeping lots and hasn’t left the house in days.  It’s likely that he’ll get over it with a round of antibiotics, but inevitably we worry when a cold knocks him out.  For kids like Lucas, a common cold can turn into pneumonia or some other illness else that could be life threatening.

All that mess of emotion – grieving, fear, worry, grumpiness about being alone for the day (one whole day!) – got the better of me, and I found myself sobbing as I sat next to my lovely, endlessly demanding son who was now prompting me to ask him another set of predictable questions.  “How do you spell cat?” he’d say.  And if I didn’t ask, he’d repeat with just a little more volume, “How do you spell cat?”  We’ve been through this enough that he knows that I know that he is feeding me my line.  Maybe he was trying to get me to toughen up, or change the subject.  But the truth is that Lucas isn’t too worried about other people’s emotions – as far as I can tell – so I think he was just moving forward with the day and letting me know that I needed to come with him.

Usually I am grateful for everything about his quirky, curious, determined personality, and it helps me through slumps.  But yesterday the slump was too deep, and the many, many hours of the day – with him and the laundry to be done (his bed smelled strongly of pee) and the dishes to be washed and the medicine to be given and the games to be fetched and the books to be read – looked like too much for me to handle.

And so I remembered that I don’t have to do this alone.  I remembered that, even though I grew up with a father who believed his main job as a parent was to teach me to be independent, I can be interdependent.  And even though Burke is on the road for work, and family is out of town, and our lovely friends in Seattle don’t know Lucas like the people who saw him grow up from his tiny, original four pounds in Washington DC… I could still ask for help.

I wrote an email to two sets of friends, grossly understating the urgency by saying I was feeling a bit overwhelmed.  Asking for help is hard for me, and the universe rewarded me for going outside my comfort zone.  Within an hour they’d both called me.  One promised to be over before Lucas’s nap to read books, the other would come over in the afternoon with her new puppy.

I’m not sure how to talk about this without clichés.  I felt like I’d won the interdependence lottery!   It was better than a locally-brewed ginger beer float with vegan horchata ice cream on a hot day. (Which, Dan, Andy, and Stef, I will take you out for any day.)  Even before they came over, what had looked like a thousand uphill miles ahead of me transformed into a do-able day.  I could sit and play the spelling game for an hour, knowing I’d be relieved soon enough.

Burke and I both want to do more of this – we want to be available to do these kinds of things for friends and neighbors, and we want to keep getting more comfortable asking for help when we need it.  A while back we thought about creating a formal care team for our family – and I’ve read about some cool ones – but we’re often not exactly sure what we need, since so much of our medical needs are covered.  This weekend having book-readers was an urgent need, and I’m sure other needs will come up.  So if you’re interested on being part of an on-call book reading Lucas team, let us know!  Or if you have ideas, models, or needs for your support team, we’re happy to offer our skills, time, and love.