Oscar and Alyssa (part 2)

(I'm finally posting the second part of this story...)

"So, Oscar," I asked at dinner that night, "how did you know you had a crush?  Do you feel different when you're around Alyssa?"

I was curious if Oscar felt some deep level of connection based on shared interests, or whether it was purely physical attraction -- did his heart start beating faster or did his face turn hot?  Would he even be able to articulate any of this?

Oscar skirted the questions, embarrassed. But I persisted while Abe and Ruby exchanged giggly glances.

"But Oscar, how did you know?"

He looked up shyly, and kept his voice low, hoping his siblings wouldn't hear him.

"Mom," he whispered, "Mom, she told me."  

Ruby and Abe cracked up then, and I too tried to suppress my urge to laugh.  Oscar got all embarrassed and yelled "STOP!" which only made Ruby and Abe laugh harder.  I knew he was smitten with Alyssa - he just misunderstood the subtleties of the word "crush".

But listening to the two of them chatter on for a half an hour last night, a good nine months and several breakups and make-ups later, I was struck with how great Alyssa has been for him.  They really do have a sweet connection and lots of shared interests.  And he can now sustain phone conversations with far fewer awkward silences --  he says "yes" and "uh huh" instead of just nodding into the phone, and he's getting better at asking Alyssa questions. 

Paul and I used to pass him post-its with prompts like "ask what she did this weekend" or "what kind of music does she like?" but he's even needing those less.  Last night I watched him settle comfortably into our squishy brown chair and chatter on about his dog walking business and then they giggled while Alyssa told him about the moth she was chasing around her house. The line got silent when Alyssa went to feed her fish, but Oscar waited and the chatter started up again.  

I know he's thrilled he has a girlfriend, but I'm just plain happy he has such a close friend. 

Oscar and Alyssa (part 1)

Last night, as Paul and I were scrambling to get dinner on the table, the phone rang.  We didn't have to look, we knew who it was.

"Oscar!" Paul shouted, "that's probably Alyssa*! You should answer it!"

Alyssa is Oscar's girlfriend. They met in the hallway outside their classroom on the first day of middle school way back in August.  Oscar had been standing there smiling awkwardly at his new classmates when Alyssa came bounding around the corner.  Her brown curly hair and wide grin immediately captured his attention.  Oscar turned to her with a smile, stuck out his hand and said "Hi, I'm Oscar" just like we'd practiced in the days leading up to the start of school.  Alyssa smiled back brightly, her sparkly brown eyes locking with his. 

"Mom, mom, I have big news!" he said as he got in the car that afternoon, looking sideways over at Ruby.  He didn't want her to hear, but he couldn't contain his excitement.  His eyebrows danced and his lips were clamped shut to prevent him from blurting out the news. We were still in the school parking lot when he couldn't hold it any longer.

"I have a crush!" he whispered.  "I'll show you when we get home, she gave me notes!" Sure enough, his backpack was full of heart-and-flower-laced love notes and Alyssa had scrawled her phone number at the bottom of one in red crayon.  

Oscar's had many crushes before, starting in kindergarten, but he's never admitted it, despite our endless probing and teasing. Last year he would blush whenever Kaley* came near him and he started standing so close to her in PE that his aide and teacher intervened.  But he never admitted that he liked her.  So it was rather curious for him to announce at the end of the first day of 6th grade at a new school, that he already had a crush.

I had to learn more.

(To be continued)


*Names changed, of course!

The Play

Oscar is graduating from fifth grade TOMORROW and I'm hell-bent on writing about these days, these last days of Oscar at his elementary school.  Every time someone mentions graduation, tears pool on my lashes, my throat tingles and I feel my inner core start to dissolve.  

Pictures won’t be enough to capture and savor these precious moments.  So, this week, while I was frantically trying to find a special tie for Oscar to wear (preferably a giraffe tie), a dress for me to wear (wait till you see!), while I attended his last publishing party, helped him gather materials for Monday’s fourth grade vs fifth grade egg drop contest, and assembled pictures for his graduation tribute poster, I also did attend my writing group, compelled to write, to get these moments down.  Here’s what I wrote about the fifth grade play at last week’s writing group: 

Two weeks ago you performed in the fifth grade class play – three (three!) one-and-a-half-hour shows with countless transitions on and off the stage. Seven speaking lines!  I knew you played the bumble bee – I’d taken your black sweatshirt and wrapped the body with wide strips of yellow duct tape while you stood with your arms straight out to the sides and turned slowly so I could keep your stripes straight. I’d stolen one of Ruby’s headbands and twisted black and yellow pipe cleaners around it and glued a black pompom on the ends to make your antennae.  I’d practiced your lines with you over and over - at the baseball games, in the car on the way to school, and at the breakfast table - until you could say them without stumbling.  I figured you’d been assigned that part because the buzzing would mask your stuttering, which I thought was brilliant.  I didn’t know though that there were other animals in the play.  I thought you were the token one – that you’d been relegated to this role because you love animals and because it was all you could really manage. The entertaining side show -- a show I would thoroughly enjoy!

But I didn’t know that you also played a student and had many other non-speaking gestures and transitions to manage.  I didn’t know that you would hastily sit down when the “teacher” came on stage and snapped you all to attention. I didn't know you would keep your head down and pretend to scribble in your journal as if in writing class. I didn’t know that when you came back on stage as the bumble bee that you’d flap your hands down low next to your hips to imitate your wings. I didn’t know that your friends would gently touch your arm to prompt you if didn’t jump in right away with your line.  I didn’t know that you really could act!

I sat in my seat in the third row at that first show on Friday night and watched you walk onto the stage in that first scene.  I put my hand to my forehead to press away the tears of joy, just the way you did last month, after that marathon IEP, when I finally told you that you’d been accepted to that awesome school* for the Fall and that Daddy and I would do our very best to send you there for middle school.  (You were so confused by those happy tears – you’d only ever cried when you were sad and we stood there on the corner hugging, me crying too then.) 

On Friday, I pressed and pressed, just like you did, but I felt the tears prick at the corners of my eyes anyway, just the way they did at that musical performance back in kindergarten. Do you remember that performance? There you stood, up on the stage with your classmates.  Up on stage with your classmates! There was no adult helping you.  You mostly faced the audience.  Sometimes you sang!

Someone took a photo of Daddy and me watching that kindergarten you and I saw that photo this week while making your graduation poster.  Our eyes are shining, our cheeks are flushed, and our faces are lined with those wrinkles that appear when you are smiling through tears and trying not to sob. 

Over the years at this amazing school I’ve gotten used to you reaching farther than I thought possible.  I really didn’t think you could surprise me with the play. But you did, walking onto the stage like that on that Friday night.  Sure I noticed how you immediately scanned the audience, looking to see who was there and where we were sitting.  Integrating all that information is hard for you but you did it quickly and then switched back into your student role. “Middle School! What’ll it be like? What’ll it be like?” you sang with the rest of the “students”, clapping your hands and moving confidently across the stage to your next spot.

I looked around the audience then. Daddy smiled and wiped away a tear.  Somebody gently touched my shoulder. Someone else nodded to me with a smile.  I wasn’t the only one noticing how far you’ve come.  And then the tears flowed harder.  Just look at you!

* a small non-public school for kids with learning disabilities where all the therapies and structures are integrated into the curriculum and food security is already in place!

The Walk

A few Saturdays ago we held our 11th Annual Walking for PWS event in Northern California.  Oscar was only 18 months old when we held that first walk and I remember how Paul carried him on his shoulders for most of the two mile loop around the Berkeley Marina. (I remember thinking it was good trunk work for Oscar to hold himself upright like that -oh how we start to think like therapists when all we do is take our kids to therapy.)

In the years that followed Oscar was eventually able to walk the entire 1.75 mile loop, and then, later ride his bike.  The Walk became a way to keep track of those hard-fought milestones and we celebrated with our PWS community, as well as our friends and family that joined us, that Oscar was able to do just a little more each year.

This year though marked a different milestone.  Oscar's class is graduating from 5th grade next week and moving on to different middle schools.  So, at the urging of Oscar's teacher and the director of our school, I invited all of Oscar's classmates and their families to join us for The Walk.  I hesitated to extend a group invitation like that because, as I keep saying, these teachers, families and their children, our dear friends now, have been "walking with us" for years already -- including and accommodating Oscar, keeping him safe, urging him to join games, listening patiently through mind-boggling stuttering, inviting him to watch a basketball game or go to the movies.  They admonish me for thanking them.  They just don't see it that way.

Nearly 50 people walked for Oscar this year at our new location - Crissy Field in San Francisco. Over half the class was there with their families, along with two families from Ruby's class, three teachers and the school's director.  We made t-shirts with the 5th grade class picture on the back for all to wear.  It was almost too much -- that sea of people wearing "Walking for Oscar" shirts on that clear blue sky day in the shadow of the Golden Gate Bridge. All those people there, for Oscar, for us! I felt my body tighten, not wanting to sink into the moment lest I melt into a puddle of tears. 

Our group was asked to lead off the walk.  I wish I could post the picture of Oscar with his friends and Ruby with hers pausing under the green and white balloon arch that marks the start of the walk but I didn't ask everyone's permission.  I wish I could post the picture of Oscar heading off down the path sandwiched between two pals.  It would show his proud shoulders (but not the slight bounce in his step as he walked off.)

I wish I could share the picture of Ruby and the two boys from her class as they wandered slightly ahead, chatting amicably, looking older than their 7 years.  When Ruby heard that Oscar was inviting his class to come and support him, she wanted to ask the 1st graders to come and support her too.  I sent an email explaining PWS to her class, realizing as I did so that I hadn't really ever taken a moment to formally educate all of those families about PWS and what that means for Ruby as a sibling.  I've been feeding them tidbits for two years now, not wanting to burden them either I guess.  I was so glad Ruby was open to sharing, and mostly that she asked for support too.

I wish too that I could post pictures of the elaborate face painting, our group with the Golden Gate Bridge in the background, the kids playing chase on the banks of the amphitheater, the teachers chatting and remarking on the day.  I'll hold this day always in my bank of memories from these amazing six years.

Here, though, are a few pictures I think I can post:

Good Friends

My friend Lindy and her three kids surprised us with a visit last week. They moved to LA a few years ago and we hardly ever see them, but we have one of those distance-proof friendships.  Brooke, her daughter, was born with PWS just three weeks after Oscar in the same hospital.  Most of those doctors had never seen a child with PWS before Oscar was born and actually delayed testing Brooke for it because the odds were so low that two kids would be born with this diagnosis at the same hospital in such a short period.

I remember the moment I got the call that another baby had been diagnosed. My heart sank and soared at the same time. I was devastated for the mom, but I also suddenly had company in my grief.

I spent many an afternoon curled up in the faded green chair in my living room talking to Lindy on the phone while the boys napped. We cried and shared feeding tips. We said things we couldn't say to anyone else.

Our kids presented differently with the syndrome...another reason we confused the NICU doctors I think. Brooke had better muscle tone and moved and rolled and batted at toys long before Oscar. Oscar had an easier time with eating and gained weight more easily (a good thing in the early months, but it still scared me).

Here they are in February 2001 -- Brooke was nearly two months old and Oscar just over three months old. Whenever I look at these pictures I remember how much I wanted Oscar to move. His shoulders were glued to the floor and it took every ounce of energy just to turn his head the slightest bit.  Brooke, on the other hand, had more muscle tone -- look how her position changes in each picture and how she's tucking her body in to Oscar's. Notice how her arms are up and her fingers slightly curled.  Oscar did move his head! 

I spent a lot of time comparing Oscar to other kids (with and without PWS) in those early years trying to figure out how he was going to fare.  I wondered obsessively if he was "mild" or "severe", terms I no longer use.  I finally realized, after many many months of pouring over articles, talking and emailing with other moms, and interviewing doctors and therapists, that PWS is a syndrome comprised of many symptoms, each with its own spectrum of possibility.  Just because a kid develops more quickly or slowly in one area really does not mean they will fare the same in another.  A kid with super low tone, for example, is not necessarily going to struggle more with skin-picking or food-foraging.  It is true, however, that a kid with better muscle tone can explore and learn from their environment, which can aid cognitive development.  (I lost a bit of sleep over that.)  It amazes me how this one set of pictures brings back all that angst.

Anyway, here are Brooke and Oscar at age four, re-enacting that baby scene. (Silly parents obviously put them up to this!)

And here they are now at age 10.

Still good friends!

School Conferences

Oscar and Ruby were home from school on Monday and Tuesday for conferences.  Our meetings weren't until Tuesday afternoon so Ruby asked to visit her old preschool. She spent Monday morning there while Oscar and I walked in the hills, talked and worked on our computers. 

Later in the day we drove a few towns over to Abe's cross country meet. It was a gorgeous fall afternoon and we hung out in the shade of the eucalyptus trees. Oscar and I cheered on the runners while Ruby practiced the monkey bars at the nearby playground.  Abe ran well and was exhausted. He plunked down on the team bench after his race and couldn't get up to cheer on his teammates, which was unusual.  (Good thing soccer practice was canceled due to the previous day's rain.)

 

Oscar cracked me up when, after Abe's race, he begged to stay and watch the 7-8th grade girls run.  We all know he has a crush on the fastest girl at Abe's school and we tease him endlessly.  I tried to capture his embarrassed smile.

Mom!

Stop!

I'm getting embarrassed!

On Tuesday Ruby, Oscar and I went for a bike ride. I'm still awed by the fact that we can do that with relative ease. We rode to the local bike shop where I finally got my brakes fixed (for free!) and then headed uphill to the coffee shop for steamed milk (Ruby and Oscar's snack) and a latte for me.  Ruby doesn't have gears on her bike but she just pumped and pumped without complaint.

Conferences were in the afternoon. Ruby and Oscar drew pictures and read up in the school office while Paul and I met with their teachers.  What a treat! I love the care and attention given to each student at this school.  Ruby is adjusting well to kindergarten and feels comfortable and confident with her new friends. She's working on her inventive spelling and writing notes and letters to me, her friends, her teacher.  We've noticed a huge improvement in her mood, behavior, and even her obsession with food since school started and I'm sure it's because she's finally getting to go to this school. She's been visiting her brothers' classrooms every morning for her entire life and always hated to leave. Finally she has a place there too.

Oscar's two teachers glowed with praise for him. Even though they've both known him for years, none of us really knew how this transition to fourth grade would go.  It's definitely a step up in expectations, organization, and content.  We'd all expected some more bumps -- but it's been pretty smooth so far. (I knocked on wood at the conference and I'm knocking again now.)

We learned that he's finally excited about writing.  He's had more tantrums and episodes of willful non-compliance about writing than anything else over the years. We've spent hours working with the behaviorist and coming up with new approaches and reward systems but his executive functioning and anxiety really impeded the creative writing process.  He started this year off using his computer with a couple of adaptive programs -- Co-Writer and Kidspiration -- but writer's workshop time was turning into typing lessons because he's really just learning to navigate the keyboard. The humanities teacher and aide switched tactics -- they're still using graphic organizers to help Oscar plan his writing but now Oscar's doing a lot of dictation.  I was amazed at the details he incorporated into his memoir piece about our family bike ride in Sea Isle this summer. He also used techniques and agreed to let his teacher share it as an example with the class even though it wasn't finished. (Oh the flexibility that required!!)  I'll put the finished piece up here when he "publishes" in a few weeks. His teacher also shared how much fun he is to teach, and that she's found that some of the modifications she's made for Oscar have proven to be really helpful for other kids in the class too.  She's so great at meeting each kid where they are and has helped Oscar settle on a "just-right" series of books where he can really focus on building his comprehension skills.

We also learned that Oscar seems to be really understanding the science curriculum (electricity and magnetism) and while he has trouble physically creating the circuits himself -- those wires are tiny and require fine motor precision - he's very observant and helpful in group work. He got 100% on the quiz!  (Abe said he failed that one in 4th grade).  The math and science teacher has also been creating modified math worksheets for him to do with the class so he has that sense of being in the group even though his math skills lag a couple of years behind.  As I mentioned in my Hopeful Parents post -- Oscar is so motivated by this and is finding math very fun despite knowing that he's behind. Pretty fantastic.

We also learned that he's enthusiastic, hard-working, and well-liked...all stuff we knew but it's so nice to have confirmation.  My favorite anecdote -- one time, towards the beginning of the year when everyone was still settling in, the math teacher was working with Oscar individually and congratulating him on really working through a problem. His classmates were eavesdropping protectively, not sure yet if the teacher would "get" Oscar (they didn't realize just how long she's known him!) and also unsure about how Oscar would do with this more difficult curriculum. When they heard the praise they apparently cheered "Way to Go OSCAR!" and "Yay Oskie!"  It was heartwarming to hear, again, how much they look out for him. 

Working on homework before music class

I'm so filled up with gratitude for this little school and the way they are able to meet the academic and social-emotional needs of both of my wildly different kids, and Abe before them.  And I'm amazed by Oscar's peers who adapt, encourage, and include so naturally.

Middle school is just around the corner -- I'm starting to consider the options.  I really don't know how we'll create a safe, supportive, and inclusive environment in an entirely new school.  We'll just have to...we'll just have to.

Baseball Season

It's baseball season again!  The house is littered with aluminum bats, muddy cleats, white and gray polyester pants in three sizes, and long navy blue socks.  I've spent hours entering five teams worth of practice and game times into my calendar.  I'm team parent for two of those teams so I am also creating and updating rosters, assigning snack shack shifts, and communicating game and team photo times. So much work, and yet, it just feels right. Seven months without baseball was way too long.

Abe had practices and scrimmages almost every day last week and a tournament this past weekend.  He tapes the rosters and schedules for his three teams to the kitchen door and marks his games on the family calendar.  Ruby's first t-ball practice was Saturday morning and she showed up at breakfast in full uniform.  Her pants, which are supposed to be knee length, reach her ankles and I had to cut a full foot off the bottom of her navy and white baseball t-shirt so that it didn't bunch once tucked in.  She's especially excited about her new pink bat with the words Girls Rule emblazoned on the side.

Oscar is playing Single A again this year and has already had two practices. With Paul in Brazil last week I played the role of shadow -- keeping him focused and moving him from station to station where he's learning to properly throw, swing a bat, and field a grounder.  I'm hardly the right woman for the job. I make a great team parent but I've never really played the game. Baseball is so hard for Oscar but he insists.  I love his determination and so I do whatever I can to make it work, including learning to throw right alongside him.

The manager of Oscar's team is a close friend and Abe's travel team manager, as well as the manager of yet another team.  D is awesome -- and I mean that in the full sense of the word.  I am fully in awe of his ability to manage three baseball teams so thoughtfully and skillfully and still spend time considering how to coach Oscar and every other kid (while also managing his business and raising four kids of his own with his equally wonderful and busy wife).  He requested that Oscar be on his team, and the commissioners who also know us happily honored that request. We were thrilled, because D is such a fantastic coach, because Oscar thinks the world of D, and because his daughter L, also on the team, has an energy and enthusiasm that just lights Oscar up. 

We got double lucky (or is it triple?) in that Oscar's classmate and good friend Ben's little brother is also on the team and their dad, is also awesome.  He helps out at practices too, as does Ben, who anticipates and quells Oscar's anxiety better than most of us.


With all these supports I guess it's not too big of a surprise that the practices actually went pretty well.  Oscar still takes forever to find his grip on the ball before he throws it.  He argues over the right height of the tee and how to follow through on his swing, but he's paying attention and trying.  He makes contact when pitched to, he's more "in the group" than he was last year, and I even saw him move his body towards a ground ball.  Whenever he gets stuck or seems resistant to an activity I put on my serious face and talk about how Major League Baseball players do these exact same drills, including hitting off a tee. He was skeptical, and I definitely saw tears brimming at the base of his dark lashes, but he proceeded to hit balls off that tee without a meltdown.

Even though we know a few of the other kids and families on this team, I decided to send an email last week about Oscar, to explain. I didn't do this last year, or the year before when Oscar played t-ball.  I'm not sure why, though I am sure it has something to do with vulnerability and commitment and protection. 

Here's the email:

Hi Mariner's Families!
I wanted to send out a quick email letting you know a little more about Oscar.  As some of you may have noticed I've been shadowing Oscar at practice, and it is obviously not my baseball skills that drive me to do so.  Oscar was born with a rare genetic disorder, Prader-Willi syndrome.   PWS is a complicated disorder -- the hallmark of which is insatiable appetite.  I know it's hard to believe since Oscar is rather thin, but his diet has been painstakingly managed since birth.  On the field you'll notice Oscar's reactions and processing are quite a bit slower than a typical kid. It just takes him longer to do everything.  He also stutters, perseverates and has some anxiety.  I'd feel remiss if I didn't also add my (clearly unbiased) opinion that he is also an endearing and awesome kiddo that works so hard at everything he does.  Baseball is challenging for him but HE LOVES IT.  This is his second year in single A and he is so proud to be a Mariner.  

Paul (my husband) or I will be with Oscar at practices and games just to make sure that his extra needs don't get in the way of other kids getting the coaching and play they come out for.  Coach D (L's dad) and D (F's dad) have also both known Oscar for years. 

We are happy to answer any questions you or your child may have about Oscar.  We talk about PWS a lot and are very comfortable with anything that comes up.  We also feel like kids are so understanding when difference is acknowledged.  If your child has questions, here are a few things we often say with younger children -- Oscar was born with very weak muscles and he's worked hard to get stronger.  Also, sometimes it takes longer for words to get from Oscar's ears to his brain and then back to his muscles (slow processing and reaction times).  Oscar's brain gets stuck on an idea and it's hard for him to stop thinking about it (perseverating).  And regarding food, Oscar's body doesn't know when he's full so his parents always give him the right amount of food to keep him healthy and strong. (insatiable appetite)

The only thing we really ask, for Oscar's safety, is that he never be offered or given food.  We'll always be around too, of course.

Ok, in the end, not a quick email... Anyway, we're really excited about this team and look forward to a fun season!
Go Mariners!
Mary (and Paul, Abe, Oscar, Ruby)

My email set off a flurry of other emails.  One from coach D to the team saying wonderful things about our family and Oscar, and Oscar's love of the game.  I was really touched, and had that feeling I get sometimes that we have a whole army of supporters.  I got several other emails, including one from another dad who coached Oscar as a t-baller.  He said that he remembers Oscar's determination and success with hitting and that he was such a pleasure to coach. (I remember only my sleepy kid on the bench waiting for his turn to bat and my spacey kid sitting in the dirt at 2nd base watching balls go by...).  The other Mariners' coach emailed to say what a great kid Oscar is and how glad he is that Oscar is out there doing what he so clearly loves. And finally, I got an email from a mom saying she's so happy her son is on Oscar's team, "literally and figuratively". Talk about getting it.

The point of this post, if I can finally get to it after so much rambling, is that I truly believe in giving people the information they need to interact with your kid with special needs. Over and over again, at school, at camp, and now at baseball, I am often initially hesitant to share but when I do I am stunned at the compassionate and thoughtful responses, first from the adults and then from the kids as they get to know Oscar and are supported by their parents, teachers, and coaches in understanding O's struggles.

It is hard to put myself "out there" in an email to people I've never met.  Not because I am a particularly private person -- if you know me you know I am not -- but because it is hard to turn all of the attention onto our family.  I feel bad clogging up strangers' inboxes.  I question whether people want the full story.  Perhaps I don't want to bias people against Oscar before they've actually met him.  And yet, when I do share, the attention we get is the perfect kind.  People in our community seem to be genuinely glad we are here and that Oscar is out in the world insisting on doing what he loves (baseball, clay class, Los Mapaches, zoo camp).  And they genuinely like having the information so that they can help Oscar be successful too.

And so begins baseball season. Three very happy children and one grateful and busy mama.
Go Raptors! Go Mariners! Go Braves! Go Thunder! Go Cobras!

Retreat

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.

Sadness

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. 

Tragedy

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.