Lucas Camilo

Yesterday we decided to take Lucas down to the White House for his first ever political demonstration (note: this is a long post – scroll to the end if you just want to see pictures).  In the past, we’ve lamented that Lucas’s disability and medically fragile state has prevented us from being present as a family at marches and rallies, which is sad because getting out to a good protest is something we love to do.  But since Lucas has gotten stronger and we’ve become more confident in traveling around with him, the time seemed right to break through the protest-barrier.

They were two other reasons that this seemed like a perfect first march for Lucas.  First, the weather was great – warm but not too warm, with clouds in the sky but no chance of rain (Lucas can’t handle the bright sun and doesn’t much care for his sunglasses either).  Second, some of our friends have been working for the last week to build festive, giant puppets to parade through the streets of downtown DC.  This was not going to be your typical somber anti-war protest but rather a celebration of “disarm-ageddon”, complete with creative “art-tillery”, puppetistas, a festive marching band, and plenty more colorful props.

We assumed that bringing Lucas along for the entire march (from Dupont Circle to Lafayette  Park) would be a bit much so we parked within a couple blocks of the White House and then walked back towards the approaching crowd.  Once we saw them coming we perched ourselves on a street corner and got Lucas ready to raise a revolutionary fist.  Everyone was overjoyed to see him – some friends on stilts approached, dressed up as the “four horses of the Apocalypse” (see photos) and waived, while another friend with a horn came over and honked in front of us.  Lucas seemed calm (if a little overwhelmed by it all), so after the bulk of the march passed by we decided to jump in and join some more friends who were pulling up the rear.

And that’s when he lost it.  Maybe the noise of the band and the chants became too much, but all of a sudden Lucas got an extremely angry look on his face, and then he just stopped breathing.  He was connected to his pulse-oximeter but it was too loud to hear the alarm, and besides we can usually tell that he’s losing color well in advance of the machine starting to beep.  With his lips started turning blue we quickly got over to the side of the street, pulled out his resuscitation bag, and gave Lucas some manual breaths as the march had moved ahead.  In the midst of it all a nice person in an SUV drove up and asked if he should call an ambulance; we laughed nervously and said that everything was under control.

And indeed it was.  One could perhaps accuse us of being irresponsible parents for bringing a ventilator-dependent child to a raucous protest, but we swear that weren’t putting Lucas in any serious danger.  Sure, he was pretty angry with us at the time, but when we laugh with him about this story some day in the future we hope he’ll recognize that we just wanted him to have a diversity of experiences, and that inevitably a “first-time” like this can be a little jarring.  And though the sight of us using a resuscitation bag on the street corner was probably alarming to a lot of people (much more so than the passing of a urine sample – see our previous blog post), it’s a routine that we’re now quite adept at.  In matter of seconds the color was back in Lucas’s face, and a few minutes later we were ready to roll.

Since he seemed to have calmed down we tried once more to merge into the back of the slow-moving march but once we got close to the noise Lucas again got angry and stopped breathing.  So we motioned to our friends that we’d take an alternative route back to the White House and left the hundreds of festive protesters behind.

Ultimately we found a spot in Lafayette Park about 50 feet from where people were streaming in and sat back to cheer them on.  We got to say hi to Christie and Oz, frequent blog followers who live in Boston and who have therefore never met Lucas, as well as hang out and take pictures with Franny (who accompanied us when we split off).  We tried to explain to Lucas why we were protesting the government on this particular occasion – it involved cutting off funding for the “School of the Americas” plus other US-sponsored military ventures in Latin America – but he didn’t seem to interested.  In the end, we lowered his chair down and just let him chill amongst the blooming tulips; that was about as content as we saw Lucas all afternoon.  Until we got home and he was as happy as can be…