Friday, January 22, 2010

Small Steps

My frustration levels are soaring lately.  There's no single thing bugging me, just the usual million small ones nipping at me like mosquitoes on a camping trip.  The overgrown woody hydrangea bushes with their dessicated flower heads taunt me as I trudge up the front steps each day, the piles of incomplete and overdue paperwork stacking up on the counters and the desk that is more a storage bin than a place I can work, the usual rain-dampened jackets, sweaty socks, and odd toys littering the house, the peeling exterior paint, the squeaky bathroom door that will not close, the bare drafty windows that with this latest storm allowed rain to squeeze through in dime-sized droplets.  Each is small but the accumulation overwhelms me.

And then there is Oscar.  Sweet Oscar who since my last post is lingering noticeably more on the edges of the kitchen watching me, lips parted, eyes glazed over, prepare our meals.  I remind him that he needs to stay out of the kitchen and he obliges but then later stealthily moves through, peeking into open pots and on counter tops for clues to the next meal.

Sweet Oscar whose ears are so attuned to any conversation even three rooms and a blaring radio away.  He cannot filter out background noise. I know this but it annoys me when he races out of his room, anxious and stuttering, repeating back jumbled pieces of a conversation he overheard.  He hears us talking but gets it all wrong. He shouldn't have been listening anyway so I yell.

Sweet Oscar who plopped down into a crying w-sit right on the bayside bike trail on Saturday refusing to get on his bike.  On the wings of last week's family exercise success we decided to try a bike ride this week.  Oscar's initial enthusiasm -- stiff legged jumping, flapping arms and excited shrieks  -- blew away with the mild bay winds by the trail, even though there were dogs there. So Paul walked with Oscar through the dog park while Abe, Ruby and I rode hard and fast on that long marsh-bordered route. 

My unofficial New Year's resolution was to take small steps toward my goals (the usual -- exercise, writing, decluttering, house projects etc) each day, and stop letting the physical and mental clutter of my life weigh me down quite so much in the process.  I wanted to stop obsessing about what I wasn't doing, and enjoy, or at least appreciate, what I was doing.

But it wasn't working.

By January 14th, a full two weeks in I was already in despair and on the verge of losing it.  Hell I was losing it.  I was short and sarcastic with the kids. Silent screams echoed in my brain and tugged on the nerves in my neck and shoulders as I guided Oscar through the door each afternoon, into the bathroom, pants down, shoes off, wait, wait, wait, wait, pee, pants up, turn, flush, turn, water, soap, bubbles, rinse, dry, to the bedroom, no the bedroom, head on pillow, question, not now, head on pillow, nap.

I argued with Abe which so rattled Ruby that she retreated to her art table to draw pictures of the two of us smiling, willing me to be happy again.  All I could muster was "Not now Roo-boo, not now" as the disagreement with Abe dragged on.

Last weekend was better, filled with dear friends and wonderful food and drink.  Though the daily demands did not disappear, they lost their urgency in the laughter and conversation. I remembered that we have friends who love us and enjoy our company and things are not so bad. 

And, with help, I finally acknowledged, again, that our life is just more complicated because of PWS. While I long ago accepted that Oscar has PWS it seems I never really accepted the impact of having a child with a disability on our life.  I work hard at this acknowledgment. Isn't everyone's life more complicated because of something?  But I'm learning that not acknowledging, not truly accepting that PWS is a real burden that complicates our life, every day, just fuels my frustration and paralyzes me so that I get nothing done and become even more frustrated. I need to break that cycle.

And so I am trying.  Small steps.

I beheaded the hydrangea. I cleared the basement of old toys and bikes and dropped them off at the consignment store. I filled 12 bags with clothing for Goodwill. I bought a shoe rack for the boys' shoes and cleaned the bathroom shelves. I re-organized the linen closet and finally fixed the print button on my blog.  Not all at once.  In short bursts over several days.

And instead of berating myself for all the things I didn't do while I was doing those things I stepped back and appreciated my work.


  1. Oh Mary, I so love you. I know that sounds weird, and I'm not an internet creep, I promise, but this post hit me right in the heart.

    I don't know if it is January blahs or what, but I've been feeling that sense of urgency and frustration and irritability too. And for reasons that run quite parallel to yours.

    You're so right in taking those small steps, in bursts no less, and being grateful and learning acceptance. I feel like you've written about me. Thank you for this post.

  2. Bring on the love Lianna! I so need it right now. :-)

  3. Mary, I'm a mom to an almost 2 year old with PWS. It is as if you write what I'm thinking or wondering about. Things are different for us, it's okay if we acknowledge it and keep moving forward. I'm so glad you posted this!

  4. Mary, I do get it. Despite what you may think, your descriptions of yourself are actually quite close to the descriptions I would write of myself on any given day, minus the obvious. I guess all we can do is keep on keeping on -- on those days. On the good ones, we can breathe and take notice and feel some joy. I think it's good to acknowledge difficulty --

  5. Thanks for your comment Jenny! I'm glad you found me and look forward to hearing more about your family.

  6. Yes, Elizabeth, thank you. When I said you had me thinking, I meant the book idea. I was so grateful for that thought. I'm lacking direction these days and you showed me a possible path.

  7. Yea! So wonderful to accomplish these things. I thought of you when I read this line, "In the meantime, we draw some practical conclusions for the care of other persons with special needs who have some savant skill. We recommend that family and other caregivers “train the talent,” rather than dismissing such skills as frivolous, as a means for the savant to connect with other people and mitigate the effects of the disability. It is not an easy path, because disability and limitations still require a great deal of dedication, patience and hard work—as Kim’s father, by his example, so convincingly demonstrates." in this article:

  8. Hi Mary -- I've so been there too! Baby steps, I tell myself, baby steps. Thank you for sharing. I love hearing about your life with Oscar.