Sunday, January 9, 2011

the snow that never drifts

The snow that never drifts
the transient, fragrant snow --
Emily Dickenson

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 on a teenager daily and this will be your life; always. She breaks things at family members homes when they are kind enough to watch her. Some tell you it's okay. Some tell you otherwise. Either way, you cross the names off your ever dwindling child care list.

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.


Tanya @ TeenAutism said...

I always love reading your posts, but I am just floored by this one. Beautiful, remarkable, insightful, and breathtakingly honest. Love to you, my friend.

Kim said...

Beautifully written as always. I love to read your posts, you always make me think!

Elizabeth said...

I am, I think, watching the same snowflakes.

Beautiful post.

Elizabeth said...

And after considerable reflection (such was the power of your post) and the changing of the sixth bowel movement diaper of my own fifteen year old, I now wish that I were looking at those same snowflakes as you and that I lived next door so that I could call you and we could go out in it literally together.

Barbara said...

Oh this post hit me hard, I know exactly how your feeling! It is good to see you posting again, you have one gorgeous family there!

I've been too busy this time of year with two on the autism spectrum makes me sometimes wish I was stuck on the roads during a blizzard. I just realized I'm not the only mother with "the list", list of who won't or will allow my children to be by them, or maybe possibly even watch them? Oh, that very list has been ripped several times, and rewritten, with more hopefulness in each word like there will be some sort of miracle. I'm also the same mommy who tries to see the beauty in autism too. It taught us so much, my daughter and son, I have to thank them, because while some parents when they get older become lazier or more reluctant to have their aging children to one day step up and take care of them. I will probably still be in my 80s, and still have more energy then most people my age will, spending my days still taking care of my children, still bolt locking the doors as the youngest decided to take some late night adventures into neighbors cars or houses, when I say neighbors I even mean 3 or 5 or maybe 7 blocks away(Whoa, what I would do to see their faces waking up to a small boy, stripped naked, flapping and giggling in their driver seat of their lexus parked in their garage, although I did get to see the angry part, but never the surprised "WTF" part, If only there was a way I could attach a video camera to my childrens bodies to see peoples reactions, it would defintely be a youtube winner! I still wonder how my boy can't manage to understand a simple mathmetical equation such as take 1 +1, but can sneak into a highly alarmed house, then garage, then expensive car, how?). Still be that hockey, tough skinned, literally on edge of my seat waiting for a bomb to explode any minute, quick to trot, stubborn headed, mean machine who will never ever let anything get in my way woman, until they stuff me inside that small little coffin! Yup bringing out my tough side ;).

I still wake up wondering what new thing broke too, who bit who today? who smeared feces and attempting to write the word "hi" in it with an "H" on one window and a "I" on another(I do acknowledge the artistic work they do!)? who decided that last nights food should be chewed, then spit up and thrown all over the christmas tree for added on decorations(It really didn't mesh well with the lights, and the tree doesn't smell very piney anymore, sort of a undiscovered trash can of 3 weeks smell has now taken over that part!)? who ate all mommys jewerly and then threw it up like a cat with a hair ball all over mommys bed(Sometimes I'm happy at least it came out, and wasn't stuck inside of them!)? why bed times are never a reality in my house? why am I not surprised waking up to a smeared combination of blood, food, and this time urine puddles? All these precious moments, that make wonder till this day what is a normal household like? Really somebody in this world needs to give me a synopsis of what its like? In the end, I still love the very fact there is NEVER EVER , EVER(did I say EVER twice?) a dull moment in our house, EVER!

Sweetie, never foreshadow the moments that make it worthwhile, even though it is hard with our children, we are so much stronger dealing with it all! My daughter is turning 23 soon, and still wears diapers, I still get those days where I cry inside my closet door, locked shut, but after the moment I do move on. I think that is what we need to keep doing, just keep moving on, and take it day by day! I hope the new year brings you more helping hands for your daughter, and a happy, safe year!

Alicia D said...

Oh Barbara, my heart is SO full after reading your comment. I love everything you write. I love your heart. I love you and you're children, though we've never even met. because you and I know each other in this common bond we share :). thank you for reading, for dialoging, for being a fantastic mom. Big cyber-hugs!!

dluvscoke said...

Remarkable writing! You put into words what so many of us feel.

I am curious. Do you not have access to respite services where you can hire professionals to watch your daughter?

emma said...

Beautiful post.

Autism Mom Rising said...

Oh Alicia, it is too much really, how these kids suffer. "It. Never. Ends." That could not have been more simply or powerfully put. I'm glad that you are who you are and have the sort of temperment who looks for the grain of beauty, even within suffering. I believe that will carry you though the worst of it.

Your writing heals. Always remember that.

kario said...

The photos are gorgeous and conjure up that quiet peace that only a new snowfall can. I love that you found the peace in it and, while you will most likely continue to find your days filled with both gratitude and aggravation, I am in awe of your ability to recognize and acknowledge both. I can only hope that CB takes her cues from you.

franquicias seguros said...

This is the best post on this topic i have ever read.I am really very impressed with the blogging

Anonymous said...

That was beautiful and so smart. Just what I needed to read this morning, after a long night in the ER with my boy. Thank you.

Kerri said...

Beautiful. But I am a sucker for PJ days. I hope you enjoyed your quiet moment admiring the snow flakes.

Anonymous said...

So conflicted and beautiful and true. Yes we always struggle between gratitude and discouragement. THanks for sharing this.

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