Friday, April 8, 2011

The State of Things

For any last straggling "fans" who check in with my blog... I know I am letting you down.  I have not been writing as much for months now, I know.  During the free time I can spend writing, I am actually working diligently on my book manuscript.  Wow, it feels so weird to actually write those words.  Anyway, I have over 130 pages written and an April deadline for completion.  I'm trying not to think and talk about it too much and just be productive.  When I think and talk about it too much?  I think and talk myself out of writing it because I convince myself that a) it's bad, b) it's stupid, c) no one will buy it and d) those few who do will think its horrible and write scathing reviews of what an awful mother and writer I am on  So, you see where all this spirals down to.  The land of self-deprecation and I'm in no mood for that place.

Anyway, not thinking... just writing writing writing. 
Okay, enough of that dullsville... onto the real exciting stuff. 

The state of things around here is slipping. 


Too much time spent writing and shopping, being social and having fun.  Not enough time spent on cleaning.  Why?  I'll tell you why.  The fake answer I give my husband is because I'm too busy.  And I am busy, that is no lie.  But too busy?  No.  I could work it out if I really prioritized it.  Truth is, cleaning is lame and boring and I do not enjoy it at all. I enjoy spending my days doing other things.
Enjoying time with the girls and their activities







and spending weekends with friends and family celebrating birthdays


We've all been enjoying the very slow start to spring.  Jersey has been fighting Spring, but we're on the cusp of bloom.  The tight buds are just starting to relax. 



Some have even opened, but not many have transformed at our house on the cul de sac.  In fact, the first flowers of the season, our daffodils, came up without any bloom.  Yes, only I could grow 15 headless daffodils.  Go figure.   

Oh, best for last.  I'm all over the place here.  So the other day, CB got a drink of water from the sink by herself , something we taught her to do a few years ago.  She's still working on shutting off the faucet after she pours a cup of water, but I'm happy with any bit of independence she demonstrates.  Anyway, she walked her cup to the table and was about to sit down.  Suddenly she sprang up and went back to the sink.  I started walking toward her, ready to guide her back into her chair for her snack, and then I saw her pick up a dishtowel laying by the sink, walk over to a spill of water on the floor, stoop down and put the towel on the puddle. She even did a little wiping motion.  Then, she left it there and went back to the table.  I stood there in shock.

She tried to clean up after her spill.


I was beside myself.  Elated.  This is coming from a girl who typically is totally clueless about the world around her.  She'll knock something over and keep walking, she'll step right into a puddle in a daze and it won't phase her.  We've been attempting to toilet train her for almost 12 years with minimal success. In fact, sometimes after sitting on the toilet?  As she is standing there to get her diaper placed back on, she'll pee all over the floor.  And me.  Completely oblivious.  She once walked out of the house with her pants down around her ankles as I was running down the driveway to collect the mail.  She is constantly in La La Land.  Words can not describe how completely disconnected she is from the space around her physically and emotionally.  But one day, she noticed that she spilled and actually tried to clean it up.  For a brief second... she "got it."  I was stunned. I was happy.  And with this small action, it planted a seed of hope.


Hope was the pulse of my world when she was first diagnosed with Autism and Severe Cognitive Impairments at age 2.  Hope floated me, motivated me, and provided the life vest to cling to in the ever changing tides.  However, hope lost its buoyancy at some point, maybe after ten years or so.  Hope was replaced by the grounding forces of realism and stark acceptance.  To a certain degree, I suppose that is natural, but I hadn't realized how just a little inkling of hope allows a crack of light into a world you didn't even know was in the shadows. 

My hope has certainly altered.  Life experience will do that.  I no longer hope for a miracle, but for an improved quality of life not just for me and my family but for CB herself.  It feels good to have it back. It feels good to believe in her. To believe that there is even more in there than she is able to show.


With such a small gesture, with such an imperceptible shift, I feel hope's pulse again below the surface, and I can let myself feel lighter.  I can hope for my daffodils to bloom.  And if there is no bloom?   I can let myself enjoy my bloomless daffodils. 


My daffodils without their bloom still remind me that spring is here. Remind me how pretty and strong the green leaves can be.  Reminding me that something is there, growing.  Just waiting to seen - not for what it's lacking, or everything it should have been, but simply for everything it is.


michelle said...

So good to read your words. Congrats on it all, especially the spill. That's amazing and made me smile wide and gave me goosebumps.

here's to hope


Autism Mom Rising said...

What a fantastic thing to happen, an unexpected surprise for momma & perhaps cb herself. The book will be wonderful, just like the blog. It is brave to put a book in the world, but so worth it I imagine.

kario said...

Ahh, so you suffer from the insecurity all other writers do. Thank goodness I'm not the only one who has no faith in my own writing abilities. Maybe if writers got paid for their time like other employees, we'd be more optimistic along the way to completing a manuscript or essay.

As for CB, that's terrific! Funny how when we stop putting expectations or desperate desires out into the universe, things find enough space to shift a bit.

rhemashope said...

i've missed you, but so glad you're writing your book!!! i LOVE your writing.

and i know just what you mean about CB cleaning up her spill. a similar thing happened for me when rhema seemed to notice herself in the mirror. she's always been so disconnected, she's even seemed disconnected from herself. but she saw herself in the mirror, stopped for a moment and kind of smiled. it was amazing.

"hope has a way of turning its face to you. just when you least expect it... you say to yourself, it's been a while since i felt this. but it feels like it might be hope." ~Sara Groves, It Might Be Hope

Cristie Ritz King, M. Ed said...

Just reading this makes me excited to know you have a book in the works. Your words are as breathtaking as these images.

Anonymous said...

That first photo, the one with the dancing pink skirt coming to life? Exquisite.

Mama Deb said...

LOVE this! I am in that phase of losing a bit of hope and trying to just accept and move forward. But those moments where there is a bit of clarity--they are so huge and so easy to grasp onto. I'm so happy she showed you she had that capability!

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