That’s right, Krista turns 34 today and Lucas has been gearing up for the last week by signing the “NaNaNa” song at the top of his lungs. Nurse Victor is coming early tonight so we can sneak out for a few drinks with friends up the street.
We’re off to a slow start with the blog this year but not because there hasn’t been a lot to reflect on. More coming soon… For now, thanks to everyone for your comments and replies to our New Year’s message :)
(from Burke and Lucas) What we really want to say is HAPPY BIRTHDAY KRISTA! Here’s a video we made while you were out this afternoon:
It’s been a good 372 years since the last time a full lunar eclipse coincided with the solstice so we decided it was probably an auspicious moment worth celebrating. Monday night we dragged ourselves out of bed at 3 am and went outside for a few minutes of viewing the huge, reddish-brown full moon. Everyone’s probably already seen a million pictures, but if not, here’s a cool time-lapse video. It was pretty astounding.
Then on Tuesday night a few of our friends came over for a solstice dinner. We’re not usually such committed pagans, but it seemed like an important year to be with friends on the darkest night of the year. Lucas sat in his chair on the floor and played. He seemed to enjoy the small party around him, as the rest of us ate barley soup and hung out. We also shared a little about the “darkness” in our lives – both the parts we find useful and the ones we’d like to let go of – and we ended the night with a small fire in the back yard. Thanks to Max, Jess, Ilana, and Buddy for sharing in on our mini-ritual!
Meanwhile, Lucas has been surrounded by lots of friends lately. Last week Sha came by and was able to hold Lucas for the first time since his surgery a month ago. And Lucas enjoyed a long snuggle-turned-nap with Heyward right before she left for Colorado. Heyward has spent a lot of time with Lucas this fall and he’ll definitely miss her while she’s gone! And then Krista’s good friend Alice was in town visiting from Michigan last weekend. Alice is in the thick of writing a brilliant dissertation about workers centers, immigrant rights and social justice movements, which made it all the more amazing that she could drop it all to come cook food and sing nanananana with us for a few days.
Speaking of the nananana song, Lucas is making major strides in his communication. He’s learned to recognize a handful of words, going beyond waiving when someone says hi or bye. Over the weekend he started bringing his thumb and pointer finger together in the gesture made at the start of the Itsy Bitsy Spider song. Now whenever we say “itsy bitsy” he immediately makes the hand sign, and we go crazy laughing and applauding and then sing him the song.
The hand signs are exciting since it means Lucas is moving towards learning basic sign language even before he can speak. But he’s certainly not afraid to speak his mind either. His voice is getting louder and louder, and he was especially inspired in his bath the other day.
We’re looking forward to Krista’s mom and sister arriving tomorrow night and then Burke’s parents coming in early next week – it will be wonderful to share the holidays with all of them.
On Monday Burke returned from his retreat in California. It was a great homecoming with Lucas – the little guy was all smiles when Burke came in and they spent a lot of time reconnecting, with Lucas touching Burke’s beard to make sure it was really him. Krista’s mom arrived later that day and has been here all week, reading, playing, and taking beautiful fall walks with Lucas.
Lucas is feeling lots better this week, and the pinkness and puffiness around his eyes is almost totally gone. Maybe because he feels so much better, or maybe because of his expanded audience, he’s been making lots of new facial expressions and sounds. He’s getting louder and faster with the tongue clicks, and on Tuesday afternoon he developed a “kissy face”, with the bottom lip coming to his front teeth and his cheeks sucking in slightly. He’s also brought back what we call “badger face” (sucking in his bottom lip), which he was doing slowly earlier this summer. So badger face is back, but it’s not always slow and deliberate any more. The video below shows better than we can describe the amazingness of the rapid-fire badger conversation he had with his Gramma.
And finally, just to really wow his audiences, Lucas has been experimenting with combining badger face and vocal sound, which comes shocking close to saying “ma-ma.” Or sometimes “ma-ma-ma-nananananananaaa.” Have we mentioned he’s brilliant lately? We’ve been so wowed that our upstairs neighbors report they can hear us laughing and cheering for Lucas through the ceiling.
It’s not all about work and performance around here, though. At the end of the day one of Lucas’s greatest skills is still the good ol’ fashioned snuggle.
Although Lucas was forced to hang out with un-costumed adults for most of the weekend, he still managed to celebrate Halloween in style. On Saturday he went to our friends’ Jess and Max’s pumpkin carving party in his dragon costume. Although he got a little bit quiet around a crowd (maybe disappointed because he wasn’t allowed to carve his own pumpkin) he had a good time and got lots of attention. He was a very cute dragon. By Sunday, when we went to Alexandria to hang out with the Randolphs, Lucas was out of costume (he declared that he actually hated the dragon mask) but full of tricks. Especially tongue clucking tricks.
So to mark the end of the month — the end of three months, actually — we have uploaded August through October photos. Enjoy!
(PS – Lucas ate beets over the weekend! And hence, the title of this post…)
The day after our last post about Lucas’s positive health reports and development, Krista and nurse Florence were at the hospital with Lucas for another routine visit. Getting off the elevator someone walked by, looked at Lucas in his chair, and let out a sad “awww.” Then, a moment later in the waiting room a man came up and said, “it must be really hard.” Throughout the long wait Krista and Florence could feel the eyes in the room on them and Lucas, each time they fired up the suction machine to clear the saliva out of his mouth or adjust the vent circuit in a way that led to that familiar, loud beeping.
It’s weird that the same day Lucas was getting compliments on his blog – about how good he looks and the excitement of all the progress he’s made – people at the hospital were going out of their way to remind us of his dramatic limitations. We still haven’t figured out how to get him comfortable in his new stroller/wheelchair, so he often looks pretty out of it when we’re rolling around. And just a glance at the tracheostomy, the vent tube, and the monitor wire connected to his toe can be jarring, even at a children’s hospital where difference is often on display.
But what you don’t capture in a 5 second snapshot of Lucas is everything. We’re lucky – we get to spend lots of time with the little guy and see him at his best: when he’s cracking up because someone is about to raspberry his tummy, when he’s exploring a fascinating new toy and deliberating on how to best get it into his mouth, or when he’s splashing his legs around in his undersized bathtub. With Lucas, patience is a virtue. The more time you spend with him and allow him to do his thing, the more remarkable he becomes.
So it wasn’t surprising that it was Florence who immediately piped up when the man in the waiting room expressed his sympathy about Lucas’s condition. “That’s ok,” she said, “actually, he’s doing great!” The man eventually sat down and asked more questions about Lucas, spent some time talking with him as well as Krista and Florence, and it ended up being a very positive interaction (he was from El Salvador so he and Krista had a lot to talk about.)
In fact, even though it can be awkward at first, we usually appreciate it when people come up and ask about Lucas, as opposed to the more common reaction of quickly averting eyes in an attempt to avoid the reality of a child connected to a ventilator. We don’t hold the latter reaction against anyone – we’ve had it ourselves when confronted with people who have disabilities. But as this curious man in the waiting room found out, there are great rewards to having the courage and patience to get to know someone like Lucas.
Of course, a few short videos from the last month probably capture Lucas’s latest exploits as well as anything. Check out the middle one in particular where he demonstrates his newly developed call-and-response clicking; the other clips, meanwhile, show the ways he’s been using his gradually increasing strength and range of motion to explore what’s around him.
Burke’s parents spent nearly a week in Washington DC and got in a lot of quality Lucas time while Krista was away. For his part Lucas had a great time, from singing the Na-Na-Na song, to taking strolls around the neighborhood, to sitting outside as Nonna gardened, to playing with eye glasses, watches, suction tubes … just about anything other than actual toys.
The trip to the farmers market over the weekend was a particular highlight, as was taking naps in both grandparents’ arms. Burke got to take some time off from work so that the family could hang out together. Nonna also taught Lucas the wonders of prunes, which can help both big people as well as a little dude who just started taking in all sorts of new foods.
Krista missed Lucas a lot but every time she called Burke assured her that Lucas missed her too but that the proverbial fort was being held down. We often put on the speaker phone and let Lucas chew on it and smile as his mommy talked away..
