Lucas Camilo

Lucas is growing out of his car seat and stroller so on Monday we went into an adaptive equipment clinic to get recommendations for replacements. We’d seen a few stroller cushion inserts for low-tone kids online and imagined we’d get something like that for Lucas. Instead, the adaptive equipment people rolled out what they said is by far the best option for Lucas. And it looked like a small wheelchair.

If there are instructions somewhere for picking out your baby’s first wheel chair, we haven’t read them. How do we know if he really needs this much technology?  Should we trust these people who have never met Lucas before?  How do you deal with the complicated mess of feelings when you notice not wanting the medical equipment that will likely make your baby feel most comfortable? Especially when just the night before you scoffed at the marketing pitch for another stroller that bragged it was not “medical” looking. We won’t be those parents, we thought.

We still have a while to adjust to the idea — because the “stroller” qualifies as medical equipment our insurance is supposed to pay for it, but it will probably take them weeks or months to make a determination about how much they’ll cover.  And to be honest, the one they recommended looks like a stroller/wheelchair hybrid, and Lucas’s brand new one will probably be nicer than the beat-up old model chair they have at the clinic.  But as parents who check out other kids’ strollers as we walk around the neighborhood, we can be pretty sure that people will notice Lucas’s stroller as different.  There are other issues to consider related to practicality, but ultimately its the outward display of “differentness” — putting your 10-month old in a device that looks a lot like a wheelchair — that makes the decision an emotional one.

Meanwhile, we’re getting ready for Lucas’s first ever post-partum party (unless you count his welcome home party, which Lucas couldn’t attend because he was still in the hospital).  A year ago we celebrated our commitment to each other, to our relationship and community, and to our then baby-on-the-way.   We decided to use the anniversary as an excuse to throw a potluck, and it’s definitely a risk.  A lot of our friends in Washington DC haven’t seen Lucas for a while, and Lucas in-person is different than blog and photo Lucas.  He’s still so floppy he’s hard to pick up.  He sometimes needs us stop everything mid-sentence for a suction (and, as we’ve mentioned before, suctioning is a loud ordeal).   Lucas moves very slowly, so it takes time to get to know him — more time than a busy potluck will provide.  And it’s supposed to be 93 on Sunday, and Lucas tends to space out when it gets too hot.

So while we’re a little nervous about (re)introducing Lucas to the world, we’re also encouraged by the fact that Lucas has been making good, steady progress lately.  His arm movements, though still very slow and deliberate, are increasing in their “anti-gravitational” nature, and he can regularly reach his entire arm off the bed to grab at something over head.  He also continues to smile a lot when he’s in a good mood and is increasingly interactive with the things around him, including people.  He may not put on his best show come Sunday but we trust that our friends will be patient with Lucas as he expresses himself in his own unique, deliberate way.