Sunday, January 24, 2010


My dear friend's husband died on Thursday. He died unexpectedly and tragically.  I am grieving so deeply for her and her children and struggling with being so many miles away when I know she is in her darkest hours.

Today as I spoke with mutual friends here and one friend in her "new" hometown there, a million thoughts circled around but one image kept pushing its way back into my mind:

It's my friend in a wedding dress, surrounded by us, her deep pool of friends.  She's walking somberly with us trailing behind, like bridesmaids. But instead of her train we are each carrying a heavy boulder.

If only it were so easy. If only I could step in line and carry some of this weight for her. I'd lug a huge boulder around all day, every day, if it would somehow ease her burden even just a little.

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.

Sunday, January 10, 2010

100 Dogs

Ever since we watched The Polar Express (again) this year, Oscar has starting counting the dogs he sees each day with a tone that is reminiscent of Santa's when he shouts:  The FIRST GIFT of CHRISTMAS! as he hands the young boy the jingle bell.

Whenever we leave the house, whether it be at 8am for that early morning OT appointment or not till late afternoon on one of those lazy winter break pajama days Oscar will call out:  The FIRST DOG of the DAY! with the same joy and importance that Santa conveyed.

And then he keeps going...

"Mom, there's the FIFTH dog", "the 17th", etc. All day long. Every day.

Many years ago, when Oscar was only 20 months old, we attended a Prader-Willi conference in Utah.   In my early hyper mode of trying to understand every nuance about PWS so I could be prepared for any possibility, I didn't shy away from the sessions geared toward families with older kids.  In one such behavior session, the speaker emphasized that we can sometimes take advantage of our kids' behavioral traits, using them to our advantage.  It sounded too easy, too optimistic, but another mom shared an anecdote about accidentally taking a wrong trail while hiking with her teenage son with PWS, extending the hike by several miles. While, if memory serves, exercise was very challenging for this kid, she got him to happily finish a very long hike by getting him going on his favorite topic: motorcycles. He talked about motorcycles for hours, but didn't complain about food or the long hike!

Listening to a kid perseverate about one subject for an excruciatingly long period of time, as some people with PWS are known to do, can be annoying and boring, especially when it is the same topic day after day.  Some days I feel as though I am going to pull my hair out if I hear one more word on the topic du jour.  And it's not just the perseveration, it's Oscar's complete inability to do anything else while perseverating. He can't get in the car and put his seatbelt on, get dressed for the day, or brush his teeth when he is perseverating. He follows me around chattering on, oblivious to my body language and everyone else's needs.  Oscar will ramble on undeterred, even asking me questions, while Ruby shouts that she needs help in the bathroom or Abe is recounting a rare story from his day or while I'm trying to measure ingredients for a recipe so that we can eat dinner before bedtime.  Truthfully, many times I have to tune him out, because otherwise I would probably have to run to the nearest window and scream and I don't think the neighbors would be too fond of that after a while.

Many families we know live with the constant perseveration about food.  When is snack? What's for snack? Can I please have some more food now? I'm hunnnngry! Repeat.

Oscar doesn't do that very often, yet.  He does perseverate about food, but in a different way.  He'll talk for hours about the dairy farm he's going to have when he grows up and what vegetables he'll grow and whether to raise his cattle on grass or corn or some mix.

Oscar has a whole list of topics.  Dogs are one, but thankfully that is mostly a counting thing with an occasional venture into how he is going to have dogs when he grows up and is in college.

Anyway, I was thinking about that mom and her son with PWS and that long hike today.  I woke up feeling like we all needed to get outside and get some exercise together.  All five of us.  A rather lofty goal with our varying ages and abilities, but I remembered that there is a 2.7 mile paved loop around a local resevoir. We've done it before, though the kids were younger and even with jogging strollers and backpacks it was a struggle.

We decided to try anyway. I brought Ruby's bike but wasn't sure how we were going to keep Oscar going.  Once we arrived, though, I realized it was going to work out just fine.  Oscar shouted out "The FIRST DOG of the DAY!" before his feet hit the pavement.  The promise of another dog (or two or three) around the next corner kept him going up and down the gentle hills, even jogging occasionally.  Paul and Abe ran ahead a couple of miles and doubled back. I chased after Ruby on her bike and pushed her up some of the steeper hills.  Oscar kept a steady, though slower pace, while he counted, but he never once complained. We all got exercise!

And Oscar counted 100 dogs.  He saw the last one as we arrived back at the car.  I don't think he'll ever tire of counting dogs. As I said to Paul, this could easily still work when he's fifteen.

Tuesday, January 5, 2010

Three Kids and a Wedding

Winter break is over, the kids are back in school, and I finally have a moment to send out a post.

We arrived home yesterday from a quick trip to New Jersey for Elizabeth (Paul's cousin) and David's wedding.  Ruby was one of three flower girls and Abe and Oscar were ring bearers.    
Ruby took her cousin A's arm as they walked down the aisle.  Check out those proud smiles!

Abe and Oscar handed out tissues to the guests on their way down the aisle.  Oscar was a little slower but Abe waited for him so naturally, so patiently.

Elizabeth was glowing, and her dad (Uncle Mike) looked so calm!

Paul's sister Susan is a newly ordained Episcopal priest and she performed the wedding ceremony -- her very first one. She was awesome! I think I'd probably start going to (her) church if we lived closer.

Elizabeth and David make a wonderful couple and our kids just adore them.  Elizabeth is holding her niece "Baby F"...the star attraction, after the bride of course. 

At the reception we danced and danced and danced...till nearly midnight. The wedding party all received black converse sneakers as gifts from David and Elizabeth and wore them as their dancing shoes.

Oscar made it through the whole reception, falling asleep only toward the end. He tolerated the loud music, the tuxedo, fancy shoes, walking down the aisle and then later being introduced on the dance floor.  He did it all with such ease and grace that I almost forgot that so many of these things can be hard for him, especially when he is sleep deprived.  He was so thrilled, so honored, to be part of the wedding that he happily went along with all that was asked.  He didn't want to dance much, and that was ok, but I got him to play drums with his butter knife to some of the more rockin' songs.

It was a wonderful wedding!