Lucas Camilo

While I was on my fantastic mini-vacation in the Bay Area, I read Boy in the Moon. It could be called an odd choice – to take four days away to rejuvenate myself, and spend it reading about parenting a kid with severe disability.  And not just any book about disability. As Burke said in the last post, this book tells the absolutely beautiful and painful journey of a father trying to understand the meaning of life and disability with a situation much harder than ours. The author Ian Brown pulls no punches. Though the contours of our life with Lucas are really very different, I found myself crying tears of recognition just about every time I picked up the book. Like I said, questionable choice for my get-away reading.

Brown’s willingness to delve into the hardest part of parenting and disability made me think about what Burke and I choose to write here, in our public forum. I rarely have an awful day and think “I really want to tell our blog readers about this.” I come here when Lucas or the amazing people in our lives have made me smile again. When despite everything, our life feels incredibly full. And of course I’m going to do that again, now. (I mean, it’s spring: the daffodils are out, our magnolia tree is about to explode soft pink everywhere. I can’t help but feel good today. ) So thank you all for indulging us in our often glowing reports about life with Lucas. I promise to come back with the hard days, too.

Probably the biggest development is Lucas’s world these days is that he is obsessively curious about letters and numbers, verging on learning to read. Today we were in the van, and I heard him chanting “S-T-O-P stop.” When I realized what he was doing, I asked him where he got that. He saw it on a sign, he said.

And in fact he has memorized at least a dozen or two words that he can spell and recognize – cat, dog, hat, etc. And he’s getting fast. Yesterday he picked up one of his current favorite books, a National Geographics Kids books called “Penguins!” He asked himself how to spell penguin, then traced his finger along the title and quickly read “P-E-N-G-U-I-N-S-I.” We’ve been through this before (the “it’s an exclamation point, not an I” conversation), and yesterday I entertained myself by trying a little harder. I covered up the exclamation point and pronounced “penguins” with as much dullness as I could. Then I uncovered the punctuation, and read “PENGUINS!” with utter excitement. Lucas LOVED it. He has trouble with enunciation – we’ve worked for a year on helping him make P/M/B sounds. But he’s a master at mimicking intonation. So he said “PENGUINS!” with the exact same up and down tones, the same emphasis and glee and exclamation as I did. He was so proud of himself.

The other game Lucas loves these days is getting himself near a digital clock (either lying in our bed in the morning, or even better, holding a cell phone) to “read the numbers.” He can read the first nine minutes of an hour easily (“Mommy, it’s four-oh-three!”), but numbers above nine are harder. I know he’s been working on recognizing ten through nineteen with Papa, so yesterday we sat out in the sun on the back porch, and played the “put two numbers together” game. I’d ask “what’s one and two together?” He’d think, and think, and then say “twelve!” After a while, he asked for a “hard one,” then a “really, really, really hard one.” So I gave him “two zero.” Then “two two.” I could almost see the smoke coming out his ears as he voraciously tried to piece together this number language. It was a stretch, and he’s not quite ready to sign up for a junior genius chess match yet, but it was so fun to see him so absolutely curious about the workings of number words. He eventually asked me what “eight nine together” is. I told him 89, but encouraged him to stick to the lower numbers. He responded by asking what “eight nine ten together” is. Hah!

Burke is in Montana for a few days for work, so it’s my turn to be home with Lucas on my own. But since it’s week days, the truth is I’m really not on my own at all. Lucas is in school in the mornings, and his nurses come home from school with him and spend the early part of the afternoon with him as well. I feel so incredibly lucky about the nurses we have. They both are so good with Lucas in so many ways – he’s always happy to see them in the morning, and he’s won both of them over so much that I’m pretty sure that most days they really look forward to coming to work with him. And as we get to know them more, they also feel a little more like family, less like strangers in our home. And now that spring is here, they’ve both ventured out for afternoon walks (alone!) with Lucas around the neighborhood. Though it’s not that different from taking him to school, it’s another one of those things we never could have imagined just a year ago — someone other than one of us taking Lucas out for a stroll. He seems to love it as they look for chickens, or dogs, or daffodils.

Have we mentioned lately how cute he is when he sleeps?