It's the most germy wonderful time of the year! Since I worked in retail for quite a while before Lucy's diagnosis, my internal holiday clock starts ticking somewhere around August. If you've never worked retail, you don't know it, but they start planning for Christmas setup in mid to late summer. THAT time would be perfect for us to celebrate the holidays; mild illness risk, warm weather... unfortunately, such is not the case in Wisconsin. Here I sit watching snow blow around outside (finally!), in isolation with Lucy. Because the bothersome little cold or energy sapping flu germs - you know, the ones you spread at your workplace or your kids have smeared all over every railing and storefront window at the mall while hacking open-mouthed on the cart handles - are EVE.RY.WHERE. And something you and your family might struggle with for a week or less with will slam into Lucy's respiratory system with the force of the Polar Express. No, thank you!
It's not that much of a sacrifice, really. I wanted to be a stay at home mom, and now I am - in the most literal sense. I do get out for a couple hours, usually once a week when Noah is home, to run errands. I make a point to sanitize the aforementioned cart handles, not touch my face, and stay the heck away from crowds or people who seem to really be TRYING to infect the general public with whatever is ailing them. I shower immediately upon returning home, throw my clothes in the laundry, and return to isolation until next week's Barb-sighting.
However, this poorly veiled scolding (Keep your germs away from us! There, I said it.) is getting away from my original intention for this post. In October, we ventured out late one weeknight to Menards, where they set up the Christmas tree forest. We drove Lucy around in her stroller and let her yank at beribboned trees and gawk at the musical lights. She loved it, but not as much as she loved the Kristmas Kringle Shoppe. Where we live we have a shoppe (I spell it that way for a reason; wait for the pictures to explain - thanks Aunt Mary for those, by the way!) that is dedicated to Christmas year-round. Perfect! We got to give Lucy her dose of Christmas wonder in August, before the crowds there start to pick up. Obviously, she gets Christmas at home too, but this place is above and beyond even what I can achieve with my extensive decorating enthusiasm.
Christmas is easier this year. Last year we were only a couple months post-diagnosis, struggling with Lucy's new g-tube feeding schedule, and still grieving quite a bit. I made sure we went and picked out a tree as a family, but the decorating was only halfhearted; Lucy and I spent the majority of our winter upstairs in our bedroom anyway, as it was too hard to haul her and her machines up and downstairs. I was afraid to be more than a few feet away from the cough assist. She needed to be vented for her feeds, which were dripped over 45 min - 1 hour five times a day. It was just easier in some ways to shut ourselves into the smallest place we could operate in. In some ways it was extraordinarily hard. It was quite the dichotomy, and left me needing some fake baking time by April to lift my spirits. Good ol' artificial sunlight!
I didn't think that last Christmas may be Lucy's only one. I don't look at this Christmas and think this may be her last one. I really don't think it will be. Of course I don't know that for sure, but do any of us know when our time here will be up? I only try to make each day enjoyable for Lucy, and I would do that whether she had SMA or not. We might just have to achieve that goal in different ways. Like maybe riding a polar bear in September.
0 comments:
Post a Comment