Lucas Camilo

2014 was a big year for Lucas, and for our family.  Kindergarten, a new home, a baby on the way.  Here are a few highlights and challenges, mostly for ourselves to look back and remember some day.

• 2014 might as well be known as “the year of the dinosaur” in Lucas’s mind.  As recently as late 2013 Lucas still focused on dogs, birds and bugs as much as dinos.  But somewhere along the line those pre-historic creatures (including pterasaurs and plesiosaurs, their flying and sea-going cousins) became 99 % of Lucas’s world.  We now mostly occupy ourselves with dinosaur books, puzzles, rock operas, and figurines – the latter of which he chooses one of dozens to bring with him to school each day.  It’s an obsession that doesn’t promise to abate anytime soon…

• Dinosaurs were part of the inspiration for our first airborne “vacation” in the last 5 years.  Lucas’s medical condition makes it very difficult to travel so we’d only gone in an airplane with him twice before – once for a medical conference and once to fly across the country when we moved from DC to Seattle.  So our trip to Los Angeles in late January/early February was a big deal.  Among other things, we visited friends, cruised a beach near Malibu in a sand-going wheelchair, and got to see giant dinosaur, wooly mammoths and saber toothed tiger  fossils up close.

• After two good years of preschool at Lowell, Lucas “graduated” in June.  Among other things, he made  major progress in the closing months at driving a powerchair.  (Still, the powerchair remains a big challenge as well.  We had hoped that by now Lucas would have his own powerchair and be able to experience some sense of independence through it.  But for various reasons he’s got a long way to go before that might be possible.)  We already miss his great therapists at Lowell and are grateful for all the people who made his two years there positive.

• Lucas also made some amazing strides this year in terms of his development and communication.  There was a time when we wondered aloud if he would ever understand pronouns or refer to himself in the first person, or have a conversation that is not totally pre-rehersed.  Though he still struggles a lot expressing himself – especially when sitting up in his wheelchair, since talking requires a lot more energy when he’s not lying down – Lucas now generates lots of original thoughts (and they don’t only have to do with dinosaurs!)  It’s really only those of us who spend lots of time with him that get to witness his brilliance… since talking with Lucas requires a little patience, and a lot of silliness.  And so we still often lament the fact that many of our friends, or kids in his class, or other people he interacts with, don’t get to experience the wonderfully amazing Lucas that we know so well.

• Lucas participated in some amazingly successful political action in 2014.  From helping us organize for accessible parks, to being a named plaintiff in a winning class action lawsuit against the biggest healthcare insurer in the state, to making the front cover of the Seattle Times, to marching against racism and police violence… Lucas made his activist parents proud!

• 2014 was a remarkably healthy year for Lucas… save one very unfortunate accident.  Just a few days before he was to start kindergarten, Lucas broke his leg.  He was forced to miss most of the first few weeks of school and spent almost all of that time lying on the couch.  More than anything, the broken femur showed just how fragile and vulnerable Lucas is, especially as his body (with extremely low muscle tone) gets longer, heavier, and harder to lift and move.  On the upside, our community really showed their love during the stressful time that Lucas was injured.

• Despite the rough start, Lucas did eventually get going in kindergarten and its been mostly positive so far.  The kids seem to warm up to him more and more every day (he just got invited to his 2nd birthday party ever!) and he’s learning a lot from his wonderful, funny teach Mr. McCullough.  On the downside, it took a lot of work and pressure on the school district to finally get Lucas a 1-to-1 aide, and even with the extra help there is still so much that Lucas just can’t participate in during a regular school day.   It’s also an extremely long day – he gets on the bus around 9 am and isn’t back until after 4 pm – and though Lucas is able to escape to a special classroom for rest, he still comes home totally exhausted many days.

• Speaking of bring exhausted, Lucas’s sleep troubles continued in 2014.  It feels like we’ve tried everything in the book to get him to sleep through the night – short of giving him heavy-duty sleep drugs – and nothing has worked in a sustainable way.  With a baby on the way, we’d really like to figure this one out!!

• Oh yeah, did we mention there’s a baby on the way?  Come February Lucas will be a big brother, and though we haven’t talked about it much on this blog, we focused a lot of energy during 2014 on the difficult process of having a second child when our first one has a debilitating disease (which also happens to be genetic and easily transferred.)  We won’t get into the details here, but we’re happy to talk with anyone in a similar situation about our journey to pregnancy.  It feels awesome and exciting to have come this far, especially since we have the endorsement of Lucas (who proudly tells people “I’m going to be a big brother!” and “we have a baby in our tummy!”)

• The baby was just part of the motivation for buying a new house this year.  Neither of us have ever been homeowners so that was a big deal, and as everyone knows moving can be a real headache.  The truth is, we still have lots of boxes stacked around the house and a ways to go until we’re officially “settled”, but we’re already feeling grateful to be in a larger, beautiful home, and to have had the help of friends and family in getting here.

• In other news, Lucas turned 5 and lost a bunch of teeth!  He also continued his passion for music and singing, and we even joined a neighborhood family choir.

We hope that we are able to see or be in contact with all of you in the new year.  May 2015 be full of new experiences, adventures, and challenges for everyone.