It snowed again. A soft, quiet snow, that began right before rush hour and promised to continue for the entire morning accumulating to about 3 inches. Enough to be either pretty or aggravating, depending on your perspective. When I went on facebook I saw a range of reactions about the snow. Some openly cursing it, others enjoying watching it fall. It was the same snow to each of us, yet it rendered such a broad spectrum of reaction.
I personally enjoyed this particular snow fall. Mainly because I had no reason to go out in it, so we stayed in our pjs all morning. I sat in my office checking emails, sipping hot peppermint tea and writing for a while while the girls played pirates on the staircase. This is the view from my desk.
I fell into a zen-like trance watching the snow fall, blanketing the landscape with purity. One of nature's spectacular shows. How different I might have felt had I been outside, cold and wet, wiping off my car, slipping on the streets!
I think about my life caring for a child with Autism and other disabilities resulting from brain damage. I want so badly to always feel like her special needs are a gift. To see the beauty in it. The blessing in it. To pontificate for hours in written and spoken word about how she's taught us so much and we're all better people for it and I wouldn't change a thing. And truth is, I do feel that way some of the time. When I have time to breathe and reflect and just "be." But, like how the mood quickly changes when you go from watching the snow fall from your warm cozy home to shoveling out your car, the same holds true with Autism. You can philosophize all day about raising a child with special challenges, staring out at it through the window pane, but at some point you have to go out in it.
Coming to peace with CB's diagnoses and living the day to day trying to remember it - and live it - does not always come easy. At least not for me. The snow stops looking pretty once I am freezing my butt off and skidding off the roads just trying to get a simple gallon of milk. The day to day can get a little (okay sometimes a LOT) aggravating. So, it's tough because so often you have to go out in it. And unlike snow that melts, you're in it 24-7-12 for the entirety of your lifetime.
You have to walk into a room and find your daughter thrashing on the floor with a bloody eyelid and head contusion after falling out of bed mid-seizure. You have to go downstairs at 4 am to find she's emptied the fridge and chewed through 10 cheese stick packages and broken a dozen eggs. You have to leave parties early or skip them all together. You watch her push and hit your other young children and never once interact with them and worry they will grow up not loving their older sister, and you cry in the bathroom alone stressing about who might care for her when you are dead and gone?
You get pummelled by your daughter in the throes of a post-seizure psychosis at 2:00 am while protecting your three small children from this scene. You have to change diapers full of bowel movements for fifteen years with absolutely no end in sight. You have to yell at her all day long to stop repetitively banging the floors, the windows, the walls, over and over and over again... the same reprimand, every five minutes for 15 1/2 solid years and it changes nothing because she still bangs and scratches your walls, bangs on the floor and the windows because she's in the grips of a compulsion like no other you've witnessed. But you know you're going to give yourself an aneurysm one day because it just drives you up the wall and quite simply: It. Never. Freakin'. Stops.
You find out she broke a window and a priceless heirloom at your mother-in-law's house, so you feel guilty and don't use her for child care anymore. Another family member babysits your daughter for 2 hours only to call you later to complain about CB being "not easy" to watch and how "she almost broke" their giant flat screen TV and ... he's just sayin'... he can't have that... no offense... so you scratch them off your dwindling babysitting list. You listen to a friend tell you "no one understands" what they are going through because of some "stubborn toddler" phase their perfectly neurotypical three year old is in (and will surely grow out of, and by the way your OWN 3 year old is in the same phase herself) but somehow NOBODY (which you assume includes you too) understands how hard they have it, and you just bite your tongue until you taste blood and tears, white knuckling the phone, not bearing to spit out that at least she should be grateful she wasn't up all night with a seizing child.
You keep a lot inside because the reality is, not too many people really know what YOU go through. Not that it really matters. It's just lonely as hell.
Over and over again, you go out in it. You dig yourself out, but it keeps on falling.
But every so often, you let yourself sit down and just be. Just appreciate. Just give thanks. Find the hope, the love, the blessings that keep you and your family going. Like the falling snow, we love it or hate it, but in the end, the meaning of it is ascribed by each one of us alone. The more beauty I find, the more grateful I feel, and the more sadness and anxiety recede.
Snow is cold. Snow can be dangerous. It can be confining. These things are true. It can also be fun, beautiful, peaceful, and draw us together as a family. The more times I can see the beauty, not the aggravation, in what fills my life the more I blanket my existence with the calm beauty of living. I can begin by taking the time to witness a single moment for all that it is, collecting moment after moment as they cascade down from the heavens in all their raw truth. They are as they are. Each unique as a snowflake. A prism of light. Beautiful. Simple. Mine.
Like the quiet dusting of snow, I can watch the moments float down like feathers. Each distinct from the next. Layering gently on top of each other, creating days, then years. Blanketing my landscape in a vision of brilliant white. Creating the picturesque scene of a lifetime.
Will I look out and see it as beautiful or aggravating? Everyday, I will fight to make the choice. And I think you know which one I fight for.