Lucas Camilo

First off, happy Martin Luther King Jr. Day!  Here’s a video of some of his lesser known quotes, which seem just as poignant today.

As for Lucas, things have been good lately around our house.  However, he had a couple of not-so-good nights of sleep last weekend which led to him act really grumpy.  We often marvel at Lucas’s very positive demeanor, especially given all that he went through as a baby (he had more shots, surgeries, doctors visits, time in the hospital, etc before the age of 1 then most kids have in their entire childhood).  He hasn’t had to deal with major health issues more recently but he is still extremely limited by his muscle disease.  So the fact that he’s so good natured – rarely crying or getting fussy – has been relieving to say the least.

Last weekend it looked like that was all about to change.  Lucas is usually picky about which books he wants to read but for a few days straight he refused – with a defiant “no!” – just about every title we offered.  The animal cards memory game was also repeatedly shaken off, and a skype chat with the grandparents offered little respite.  He cried throughout much of his physical therapy appointment and refused to go up in his stander at all.  The only thing he wanted to do was watch penguin videos on the iPad, which he let us know by chanting over and over “ha-hee-der, ha-hee-der!” (Lucas-speak for computer) while moving his hands in the accompanying sign.  There are some educational apps that Lucas now uses on the iPad but he refused to play those, and we refused to let him watch the same silly penguin video on repeat.  It was a stand-off.

Then he got a good sleep on Sunday night and suddenly things were back to normal on Monday.  We breathed a sigh of relief that perhaps the terrible twos had been averted once again… but the tiring weekend also got us thinking.

Nona engages in another round of "animal cards"

In a way, Lucas has a right to be an impatient toddler.  Like most 2-year olds he has an inquisitive mind, wanting to explore all the fascinating things the world has to offer.  And yet, the world that Lucas physically has access to consists of a 12-inch radius semi-circle around his head when he’s lying down, and is even more limited when he’s sitting up.  He can’t move his body or even roll over, and is therefore almost completely dependent on us to fulfill his whims and desires.  Given that muscle disease also limits his ability to communicate – even as his progress in using sign language and verbalization has been remarkable – those around him don’t always know what he’s after.  Whereas you can set a typically developing kid loose in a playground or in room full of toys and they’ll entertain themselves for hours, with Lucas just about every game or activity imaginable requires a helping hand.  If he’s coloring he needs us to hand him the markers.  If he’s reading he needs us to get and then hold the book.  If he’s done with the book and ready for animal cards, he needs us to reposition his body and set up the cards.  The fact that Lucas is smart and seems to crave challenges and stimulation is wonderful but it also means his needs can be constant.  For his parents and other caregivers it’s tough work.

In some ways this new dynamic is exciting – it’s much better, and certainly more rewarding, than the hyper-vigilance we had around medical issues when Lucas was a baby.   Indeed, for a kid with less possibilities for entertainment and fun, Lucas manages to go along with and even suggest new ways to play and engage with the same set of books and toys each day.  He basically invented the aforementioned animal cards memory game, for example, after getting bored with just holding up cards and doing the sign for each animal.  There are certainly times when we wish he were a little more open-minded when it comes to trying new games, and a little less demanding when it comes to playing the same one for the 15th time in a row.  But such is parenting a 2-year old – his disability doesn’t really effect that dynamic, just the terrain on which it plays out.

Ultimately the terrible twos may still come, and we’ll figure out a way to deal with it (including asking friends and family for wisdom.)  Last weekend made us feel lucky about Lucas’s usually easy-going personality even as he faces the challenges of living with severe muscle disease.  We also know that more difficult times are ahead, whether as part of so-called terrible twos or some other stage of development. And as his needs continue to change we’ll keep doing our best to be thoughtful and patient parents in order to help him take on those challenges.