Monday, April 3, 2017

Home Turf

A few weeks ago marked the one year anniversary of us moving into our current house. We made the move for Zoe, so she could have better ground floor living space (not knowing that we would need even more room for her baby sister, who also marked her own one-year anniversary recently). Zoe wound up with the biggest room of all the kids, and as time and budget will allow, we will continue to enhance her space, making things more accessible for her long-term care. Aside from the house itself, we have enjoyed the benefits of being in a part of the neighborhood populated by more kids, right next to the elementary school. Zoe's older sister walks the one block to school, and all the kids enjoy the proximity to the school playground. Zoe has one of the least efficient commutes imaginable; her service plan mandates bus transport, which takes her five blocks out of the way to get to the school's front door, even though the school is visible from our own front door. As drawbacks go, we can live with that pretty easily.

A week or so ago brought the last snowfall of the winter. For reasons I can't recall, Zoe was not ready when her bus came. My wife walked Zoe down to school in her wheelchair a little after the first bell rang. I wound up having to follow them an hour later with the wheelchair mount for her Tobii or some other forgotten piece of equipment. I happened upon their trail in the snow, still clear despite additional accumulation. Her siblings and friends routinely leave their boot prints in the snow, out playing or just wandering the neighborhood. Given the assistance she needs for those activities, and her general disdain for the cold, Zoe doesn't get the chance to leave her own mark. These tiretracks were like some odd archaeological find, unique enough to move me, even though I knew their creator so well. I loved knowing that no other kid in the neighborhood (for good or bad) left behind the same kind of trail as my Zoe.

Sunday, January 29, 2017

Some Outgrown Notions

Zoe's always had a good relationship with Santa Claus. That seems like an odd statement to make about a little girl who rarely gets anything for Christmas she wants or can readily use. Sure, she's gotten a gift or two each year that she's enjoyed, but most of the stuff from Santa sits in a corner in her room or gets carried off to parts unknown by her little brother, doomed to be gradually destroyed.

One of our favorite pictures is of Zoe, age 4, walking (with Steph's support) to see Santa and sit in his lap. There is a look of wonder on her face so beautiful, as if she knows this guy with the beard might just be able to unlock something magical for her. Subsequent Christmas visits to the mall were just as nice, but not as dramatic and moving. She would sit with Santa, snuggle with him, and telepathically let him know what she might want him to bring.

This year something was different: Santa himself. There had been new mall Santas before -- maybe three different ones in five years -- but they always resembled each other just enough that even I, with a year in between visits, could never remember if it was the same one as the year before. But this year, he was unmistakably different. He had dark eyes, where the others' had been twinkly blue, and he had charcoal-colored eyebrows. Despite the beard and standard red suit, he looked younger and different, and Zoe knew right away. She stared at him angrily for the entire time she was in his lap. All six of the pictures the mall elves took show the exact same glare, which continued once we'd said goodbye to Santa and moved over to pay for the picture. It was pretty clear that she was not buying this shit for one more second - Santa was an imposter. 

As we drove home, I didn't feel sad or wistful. I was actually gratified that my daughter was every bit as sharp and observant as we tell everyone who doubts her (or other Rett girls). I also won a gentleman's bet with myself that she would figure out Santa might not exist before her older sister, who's nine. She is about the age when I started to doubt Santa's existence. It only follows that she has had the same doubts sown in her head, from hearing classmates talk around her. Unlike her older sister, she hasn't voiced those doubts, because she can't, and we haven't soothed them for her, because we didn't know we needed to. But I'm convinced she's onto something, and our conversations with her leading up to next Christmas will be a lot different than in the past few years.

It feels like a big hurdle in her maturation, but one that doesn't sadden me. So she doesn't believe in Santa, but she also doesn't have to. She hears her parents talk about ongoing research and possible scientific breakthroughs enough. She might have more faith in a whole other group of people to deliver what she wants. They aren't up in a North Pole workshop making sleds and dolls; they're working out of labs across the country every day. We hope, as does Zoe, that they got all the microscope slides and Petri dishes they asked Santa for this year. With the reversals in symptoms for which we've been hoping, it's not crazy to think Zoe will, before too many years go by, spoil the truth about Santa for her younger brother or sister, as any big sibling should. If not, we'll continue to wait, and Zoe will look with her lovely, bemused expression as first her younger brother, then her baby sister, and eventually her older sister realize in turn what mystery she figured out this Christmas.