Spring is arriving in Seattle and that means more walks in the park and other fun outdoor activities. Krista finally got a bike that she can rig up our baby seat up and carry Ida. We tested it out the other day:
https://youtu.be/dUh37iGoJJc
Ida was subdued during her first ride, but as you can see and hear from the video, Lucas was ecstatic. Which is a beautiful thing. Here’s a kid who, because of his disability, has never been able to do many kid things like ride a bike– but he didn’t show a hint of jealously or longing while cheering on his little sister. The chants of “Go Ida, Go Ida!” which Lucas initiated were music to our ears.
On one hand, its not surprising. Lucas is now six and a half years old but he’s never expressed remorse about his disability, or envy towards other kids who have the physical capacities to play in ways that he is prohibited from. The same can’t always be said of his parents. At a recent party for one of the kids in his class we showed up amidst the usual craziness that occurs when you get a dozen first graders together outside of school. Screaming children raced around blasting each other with squirt guns while Lucas sat in the middle of the deck in his wheelchair being virtually ignored. Our hearts sank. But all of a sudden Lucas got a huge smile on his face and exclaimed, “I can see the sun through the branches!” It’s hard to say to what degree he was oblivious to the wild kids around him, or just ignoring them, but it was clear that the pleasure of spotting the setting sun was genuine. That’s our boy.
But with Ida, perhaps, you’d expect it to be different. Already you have the built-in dynamic of the little sister who steals away some of the parents attention that used to exclusively reserved for him. On top of that, Ida is already able to do things that he could never dream of– if only because she’s not connected to a ventilator. Despite her own low muscle tone and physical delays, when Ida wants something she can often get it, usually by hitting the deck and rolling across the room to the object of her desire; she is able to enjoy the wonders of tasting and eating food (and boy does she love it!); and she can do other fun baby things like riding on our shoulders or being thrown into the air and caught repeatedly while screaming with joy.
Meanwhile, she’s also getting stronger every day and making some major break-throughs around crawling and standing. Here is where Lucas’s encouragement for Ida is truly remarkable. The other day Ida took her first few crawls — not far, but definitely moving forward on her own while on all fours. Krista yelled out “she’s crawling!” and Lucas repeated it with a questioning tone (“She’s crawling?!?”) and then said “I want to see her!!” She soon fell back down on the floor but Lucas had caught a glimpse and couldn’t have been more proud of his sister. The same happened when she started standing up more confidently a few weeks back. We often get her leaned up against Lucas’s table, which sits up against the couch that he’s lying on, so that he can look at her as she plays around with different objects. Though it annoys him when she grabs away his dinosaurs, he still comments proudly, “Look at Ida standing there!”
Of course, there are times when we’re so focused on Ida that Lucas ends up feeling left out, mostly because he’s stuck in a place where he can’t actually witness what we’re all doing. Still, he tends to be a pretty good sport about it, mostly just calling out “Mommy! Daddy! I want to see!” Such was the case in this recent scene where we were playing with Ida by the window while he read books on the couch by himself (also, you gotta love that Ida smile!)
https://youtu.be/WRA4gmDBRVQ
For Lucas’s spring back we went south to Oregon, spending two days with Krista’s mom and sister outside of Portland, and then traveling to the coast for another 3 days on the ocean. We stayed in the town of Lincoln City, and despite overcast and sometimes stormy conditions, we had a blast. For us, any time we pull off a trip – with a van full of medical equipment, special arrangements for wheelchair accessibility, etc – it feels like a major triumph, and our vacation on the Oregon coast was no exception.
