Lucas Camilo

Burke was in New York for a couple days for a friend’s wedding, so it was just Lucas and I (and nurses) here in Seattle for the weekend.

I’m tempted to give a full report of all our recent comings and goings – zoo, friends, parks, beaches, and walks along the lake.  But more significantly than what we’re doing is how happy I’ve been feeling these days.  Some of it is the sun and the outings and the adventure of exploring a new place.  But a lot of it is related to how well Lucas is doing, and what fun it is to be his mom.   Every day I get to explore something new with Lucas, and every day he blows my mind with something he’s figured out, wrapped his own brain around, or latched onto with gusto.  He makes me laugh many times a day – almost as often as Burke makes me laugh.  And he is so passionate about things.  Currently it’s Spanish, so as we walked along in the park yesterday I could hear him chanting to himself, “Red, rojo, yellow, amarillo, blue, azul.”  It gives him so much pleasure to learn, and he’s good at recruiting any willing bystanders to join him on his quest for knowledge.

And I love watching Burke and Lucas together.  Lucas still likes Daddy a little more than me, which I’m OK with.  It’s so fun to watch Lucas’s face lights up and he exclaims with such deep joy, “DADDY!” when Burke walks in the room.  And I love watching Burke hold Lucas gently as they dance to one more round of “Be My Penguin” (his current favorite song).  And then I love watching Lucas convince Burke to dance to the song one more time, even though Burke’s told him it’s the last time already.  Multiple times.

I write all this wishing I could bend time in such a way that I could reach out and hand this letter to myself back in the fall of 2009.  So many of you reading this were there with us, visiting and calling and feeling the intense fear and grief and love that came with Lucas’s entry into the world — I wish all of us could have known what we know now.   Because all of this was unfathomable at the time, at least to me.  A diagnosis of a lifelong disease seemed like a sentence — all the things our baby would never be able to do.  I could never have imagined that there would be days that I’d be grateful for MTM.  I hesitate to write those words, because I know it’s so hard to believe.  But this disease so profoundly affects how Lucas is in the world, and we love Lucas so much, that it feels like splitting impossibly fine hairs to separate loving Lucas from the disease.  Last night when Lucas slowly and carefully, using a precise hand-over-hand maneuver, turned his book around so I could see the words on the page he was “reading” without losing his place, I was overwhelmed with pride at his amazing talent, agility, smarts and determination.  I know all parents are proud of their kids, but I’m not sure I would ever have experienced this particular kind of swelling in my heart if it weren’t for disability.

On days like this (and it’s not every day, of course), I want to reach out to every family with a new MTM diagnosis and assure them that their life, too, will be absolutely joyous at times.  But I know that’s only partially helpful, since the hard, sad, frustrating and painful moments are real too.  And maybe more importantly than reassuring anyone else, I want to record this feeling because things in our life will change — we’ll face transitions, new doctors, inaccessible spaces, intense staring on the street… or nothing new at all.  My mood has been known to swing wildly of it’s own accord, so maybe next week I’ll be back here reading this to remember how fleeting any emotion, even the deepest ones, can be.

I may be extra reflective about how wonderful our life is right now because Lucas appeared to be sick last Monday.  He was listless in the morning, and by afternoon he was fully passed out.  We couldn’t get him to wake up from his long afternoon nap that basically kept going into the night.  He had a slight fever and looked so bedraggled.  So when he woke up looking better the next morning, we breathed a huge sigh of relief.  And we took him to the pediatrician to confirm that all was well.  We are so lucky to have Lucas almost constantly in good health, so the flicker of a reminder that his well-being is still delicate helped put all the good days in even greater relief.