Saturday, February 27, 2010


I'm back in the snow -- in the Midwest! When Kate Hopper announced a few months ago that she was planning a Mother Words Retreat in February, in a beautiful lodge just a few hours northeast of Minneapolis, I wanted to hop on the plane right then.

Kate's a fantastic teacher -- thoughtful, insightful and attentive to both our written and spoken words. I took her online Mother Words class last summer. You know, the one where I basically had to drop out halfway through because I was trying to cart the little kids over the hill to sunny Orinda for swimming and get the big guy to camp or baseball practice and back every day. I was also just a little caught up in the administrative aspects of baseball tournaments. It was a fun summer, but it didn't include a lot of writing.  Still, I printed out every one of Kate's wonderful lectures, inserted them into my neatly tabbed binder, and kept up with the reading as best I could.  Even though I didn't write much then, the class got me thinking, over some mental hurdles, and ready to write once the kids were back in school.

Kate's Mother Words retreat, and the pictures of the cozy lodge weren't the only draws.  My friend Shannon, who moved from Berkeley four whole years ago lives here (for another month anyway). As does my dear friend Elizabeth who I hadn't seen in eight years.   I spent the first three days of my trip visiting these friends...chatting and chatting and chatting.  Even separated by all these miles for so many years, with only occasional phone calls, we still connect in the ways we always have. 

I also got together with a high school friend, Michelle, who I hadn't seen in 19 years. We found each other again on Facebook several months ago and before I knew it we were sharing our favorite poetry (remarkable in that I don't read too much poetry) and connecting over life changes, grief, and children. To meet up with her in person yesterday morning in a busy Minneapolis cafe was such a treat, and still not enough.

And now I am here, at Faith's Lodge, in rural Wisconsin with five other writers and Kate. The lodge is beautiful and homey -- leather couches and fireplaces bring warmth to every common room and guest room.  I'm writing and writing, on my favorite notepad, in my small blue notebook, and on the computer, for hours on end.  And we're sharing -- me and these these six extraordinary women -- the stories of our lives as we read and talk about our writing (and a few other things too!)

I head home to Berkeley tomorrow evening and my goal, of course, is to find ways to keep my writing moving forward amidst the chaos of my real life. This retreat provided a huge boost and lots of inspiration and now I *just* have to sustain it.

Tuesday, February 16, 2010


We're in the mountains for a few days of skiing.  The blue skies, tall green pines, and soft mounds of white snow blanketing the hillsides fill me with a much needed calm.  Today from the top of the lift I could see Lake Tahoe, sparkling blue and surrounded by snow tipped peaks. Paul can point to each peak and tell me where we have skied and where we have backpacked and where we have hiked, but I am happy to just stand there in silence and appreciate the raw beauty.

We often come to Tahoe with Paul's parents to ski this time of year.  We skipped last year because Abe broke his arm so badly in November '08 that he still wasn't medically cleared for skiing last February. It's been two years since any of us have been on skis. 

Two years ago, at age three, Ruby could barely shuffle her skis along. This year she couldn't wait to get out there. She coaxed Abe into her room right after breakfast yesterday and enlisted his help pulling on her ski socks and long underwear.  She started the morning skiing between Paul's legs and then graduated to wearing a bright red harness around her chest.  Paul held the reigns from behind and she skied out ahead, falling frequently but also learning to shift her weight slightly for turning. She's far from skiing independently but her wide smile, contagious giggles and enthusiasm foretell years of skiing ahead.

Abe now skis the black diamond runs with Paul and Grandpa. He races down steep terrain and through clusters of trees with an aggressiveness that borders on recklessness.  When he got home yesterday he collapsed in a cushy chair by the window and just sat.  He was sated. But tomorrow I know he will be the first one dressed and ready to hit the slopes again.

Oscar started skiing when he was six years old.  Skiing was one of those things I'd crossed off the list for our family.  When Oscar was diagnosed with PWS I felt my world collapse around me leaving only faint paths in a field of craters.  Family ski trips sunk into one of the craters, along with Christmas cookie baking, parties with buffet tables, family backpacking trips, and a million other things I'd taken for granted until then.  As time passes, many craters have filled back in -- things I'd erased have re-emerged as possibilities. Perhaps not exactly as I had imagined them, but often close enough.

Disabled Sports Far West made skiing a possibility for Oscar.  We signed him up three years ago for his first series of lessons, not knowing how it would go.  Besides having rather low trunk tone, low energy, balance and motor planning issues, he's also prone to anxiety, can be rather rigid, and is not exactly fond of being cold.  On the rare occasions we are somewhere with snow he's proven to be a reluctant sledder and not so into snowball fights.

But he loves to ski! Disabled Sports has all sorts of adaptive equipment to accommodate skiers with a wide range of physical and developmental disabilities.  Yesterday a very young girl who cannot stand independently was skiing with a walker type device.  Wheelchair users are accommodated with monoskis, and some skiers have two instructors to help with the equipment and encouragement.  When Oscar first started skiing he had a rigid bar connecting the tips of his skis so they wouldn't cross. He wore a harness held by one instructor and steadied himself with a ski pole held across his trunk by another instructor. I'd mentioned his love for animals, so as they inched down the hill they looked for imaginary lions and giraffes among the trees that line the beginner run adjacent to the adaptive ski school. 

The instructors keep detailed notes of each lesson documenting Oscar's motivators, the equipment he used and their thoughts on his progress.  The notes remain in his folder and are reviewed each morning by that day's instructors. I remember thinking that this could easily turn to babysitting -- Oscar would probably be fine doing the same run with the same equipment, lesson after lesson. But each day the instructors challenge Oscar to progress to the next level with minimal frustration and anxiety.  He's actually learning to ski! At the end of his two and a half hour lesson he is exhausted but always seeks reassurance that he can return the next day.

So many of us raising children with special needs write about how frustrating "the system" is. We fight for appropriate educational accommodations, we spend hours in doctor's offices, we attend dozens of meetings, send zillions of emails, and we are buried under piles of insurance claims and paperwork.  Everything is just harder when you have a kid with special needs and so few people really "get it".

Disabled Sports Far West is exactly the opposite. Sure there is a little paperwork to fill out, but just one page and the questions are relevant.  And they read it.  Yesterday I pointed out to the intake person that I had written on the form that Oscar can only have the food and drink that we bring for his snack at ski school. She smiled kindly and said "no problem, we'd already seen that".  It was clear too that they were aware of his anxiety.  His name wasn't actually on yesterday's skier list, but instead of telling me that in front of Oscar, she discreetly called her supervisor over to the back door and they summoned an additional instructor.  Oscar never picked up on the mistake and it was rectified immediately.

Somehow skiing with Disabled Sports is also cheaper.  Oscar gets a private lesson and a lift ticket for far less than we pay for Abe or Ruby at the regular ski school.  And we can use the disabled parking spots right in front instead of walking for miles through the Alpine Meadows Ski Resort parking lot. 

Yesterday was Oscar's first lesson of the year.  Like Ruby he couldn't wait to ski.  I was a little concerned to see that he had just one instructor and no extra equipment this year.  But Oscar's instructor Linnea used a ski pole or her hand to give him confidence and by the end of the lesson he was skiing very short bits on his own.  She worked on weight shifting for turning, calling his left leg "Lion Lefty", and his right "Rhino Righty", capitalizing on his love for animals.

Today's ski lesson was with Clayton, a twenty-something athletic man. Oscar loves young athletic men.  At school he does secret handshakes with the men who teach PE and afterschool and he works harder with them than he does with anyone else.  They are cool and Oscar wants to be cool too.  He responded to Clayton in the same way and emerged from his lesson turning better and skiing faster.  I found out afterward that  instead of looking for imaginary giraffes they spent their time on the slopes looking for "cuties", which, in Oscar's words, are "tallish, youngish girls".  In order to spot "cuties" Oscar had to turn, so turn he did!  I don't know how Clayton knew Oscar was already a little into's just part of the magic of this ski school I think.  Clayton also got Oscar to agree to ride a different chairlift and together they tried a harder run.

Even though they call it Disabled Sports, Oscar is just a kid here and I think that is what I love best.  Each skier is treated with such respect and kindness and their needs are completely and safely met.  I realized this morning as I was skiing with Abe and Grandpa that I wasn't even worried about Oscar. I'd dropped him off with virtual strangers and knew he was completely fine.

Family skiing is definitely back on the list. In a few more years I predict that Oscar will be riding the chairlifts with the rest of the family. He might be taking the easier way down but I'll do that with him...I can enjoy the beautiful scenery better that way anyway.

Wednesday, February 3, 2010


I've been consumed with sadness and grief these past two weeks -- my thoughts revolve around my bereaved friend and her family.  Her husband was a kind man with a generous heart.  When Oscar was first born and I was steeped in the shame and grief of having a child with a disability, he did not shy away.  Instead, he gravitated toward Oscar.  He would gather my floppy and unresponsive infant from my arms and hold him,  calling him "Sweet Oscar". For nearly two weeks now I've been hearing his voice softly calling "Sweet Oscar! Sweet Oscar!"  I hope I thanked him. I hope he knew how important that was to me.  I hope he knew that gestures like his opened my heart to love and the possibility of a happy life, even with PWS.  I hope he knew.

I spent the weekend in their new hometown, amongst throngs of friends and family that gathered for his memorial service. We supported our friend the best we could, but then we had to board our plane for home.  Leaving there was one of the hardest things I've done, ever, and I found myself doubled over on the sidewalk outside her house sobbing "I can't do this. I can't leave her.  I -- can't -- leave -- her!!"  I just wanted to crawl into her bed, wrap my arms around her, and shield her from the frightful, searing pain.  Patient friends and her wise mother helped me see that we had to leave. She needed rest and quiet days with her family.  This will be a long journey and leaving her then was not abandoning her forever. We will go back, we will listen, and we will remember.  I think that is all we can do.