PWS Awareness Day 20: Grief, still?

Abe interviewed me yesterday for a class project.  He needed to talk to someone who had survived a challenging time.  He'd been trying to track down a local Holocaust survivor who speaks at area schools, but he'd been unable to reach her.

Raising a child with a disability.  Surviving the Holocaust.  Not in the same category.

"I don't think I'm what your teacher is looking for," I said, my eyebrows scrunched.

"It's fine. It's fine," he insisted.  I felt like he was taking the easy route, but I let him do it anyway.

He followed me around the kitchen with his voice recorder while I brushed the dirt off the mushrooms. While I washed and sliced the kale.  While I shucked the corn, then simmered the soup.  Oscar was sleeping and Ruby was playing wiffle ball at the park.  We had privacy.

"Tell me about Oscar's birth," he asked, his voice soft.

"What were those first few weeks were like?"

"How did you cope?"

I talk about Oscar, PWS, and our family all the time.  I tell our story whenever anyone asks, and, these days, I can do it in that half-smiling, shoulder-shrugging, "life is crazy but we're totally ok" kind of way.  Sometimes, I even throw in a joke. 

And I've written about the scary first moments.  A lot.  This weekend, at the writer's workshop, I shared excerpts of the beginning of my memoir.  Some of the writers in my group told me that they cried when they read it. But I didn't cry when I wrote it, and I started to wonder if I am too distanced now to write it. 

But yesterday, when Abe started asking questions, I felt my body tense up.  I bit my lip and bobbed my head from side to side till I could get the words out.  I swallowed.  But it was useless. I couldn't hold back the tears.

"I don't know why I'm crying," I said to Abe. "You know most of this stuff. We've talked about it."

He smiled and waited. He wasn't uncomfortable.

I thought I'd gotten through all the tears. Years of therapy and support groups and crying to friends and family -- I did a lot of processing those first few years.

Maybe it was because now it was Abe asking the questions.  Abe who was only two when Oscar was born, and, oblivious to our grief, made us all dance in the living room every evening when we returned from the hospital to Neil Diamond's It's A Beautiful Noise, because the song mentioned a train.

Or maybe it was the recognition that my confident, skilled and compassionate older son is undeniably, and beautifully, shaped by an experience I fiercely wished I could have protected him from.

Either way, apparently there is still a little bit of grief buried deep inside.

PWS Awareness Day 19: Abe's Perspective

What is it like to have Oscar as a brother? I should know. I’m Abe, Oscar’s older brother (Read about me on the right side of this page).

Oscar is much more “normal” than you might think. He has relatively strong social skills, and he is articulate and coordinated enough that on first glance, he could easily be just another teenager out with his family. I think that’s how most people see him—people who don’t know him anyway.

To close family friends he is much more—a funny, talkative, brother of Ruby or me, or son of our parents, who is a huge A’s fan and loves animals. Oh and he has Prader-Willi syndrome too. But that doesn’t quite tell the whole story.     

To me Oscar is a funny, hardworking, earnest, and stubborn brother.  Our relationship is similar to that of other siblings who aren’t disabled (I think). We talk (and argue) about baseball; we plot against our parents, our sister; we play board games together. Doing these things with Oscar can be very rewarding. Yet in these situations he requires some extra scaffolding from me, as my mother would say.

In order to keep him in a good mood, I have to be careful that I don’t question his opinion, start winning by too much, or set him off in any other way.  I try to walk the line of stretching him as far as he can go, or close to snapping, because I think it helps him grow as a person. Later in life, I want him to be able to win arguments, to be gracious in defeat, to do things that other people can do with less difficulty than he can.  

I set my hopes high, but his goals are even higher. I want to give him a chance to reach them.

That’s my mindset on a good day.

There are also days when I don’t have such an optimistic view. Days when Oscar is anxious, upset, worried; when he throws tantrums over minor details. Days when I can’t make him laugh. These are the days in which I wish he didn’t have a disability, I question why it had to be me, I wonder about life with a “normal” brother.

We always hope there will be fewer of those days in the future.

"S" is for Siblings (Write On, Mamas!)

I'm over at Write On, Mamas! today with the "S" post in the A-Z blog campaign. Be sure to check out all the letters of the alphabet and poke around the site a bit.  You will love the writing and the clever photographs that accompany each letter.

I finally joined Write On, Mamas! a year ago when my then new friend J practically dragged me. J won't remember it that way - she'll just remember me asking to carpool with her or something.  She didn't know then that every few months I'd pull up the website for the previous incarnation of WOM and think about emailing the coordinator.  I did a lot of thinking. I never emailed.  I never went to a meeting. But now I stake out those Sundays, leave my family in the midst of important Sunday afternoon activities (like baseball watching and weed pulling) and get myself over to Marin.  I find a spot at a table and I write, surrounded by other mamas just trying to get some words on the page.  After an hour or so we pull our chairs together for announcements, and then we are joined by our guest speaker. Last month we were treated to a panel of our own members sharing thoughts on building a platform.  And we also cheered on a few writers who auditioned for Lit Crawl in October.  I was blown away by the writing, and also by how much writing these women squeeze in between all the mothering and, in many cases, working.  I refuse to consider what took me so long.  I'm just glad I finally got there!

A Rare Tuesday

It's a rare rare Tuesday -- no baseball game for Abe tonight.  No dinner with friends. No meetings about teen alcohol prevention, no science fairs or school concerts. No soccer practice or music rehearsal. And so we are home. Oscar is napping and I'm making dinner for the first time in over a week. 

Ruby made fruit salad, cubing apples and oranges and bisecting tiny frozen blueberries till her fingers turned blue. She topped the salad with sliced almonds and divided it into two bowls - one for her and one for Abe. They sat at the breakfast table and chatted and made silly sounds while I scrubbed carrots for the stew.

Then Abe tuned the little toy guitar he got when he was two and handed it to Ruby. He picked up his own guitar and they strummed together, Abe stopping every couple minutes to reposition Ruby's still chubby fingers on the frets. And now they are playing a board game. Abe is explaining the rules to her in a fake British accent and she is giggling and hopping like a frog in the orange jumper that she's wearing with purple leggings and wool socks.

I love Abe's baseball games. I love the evening sun on my face and the cheering and chatting with friends in the stands. I love watching Ruby invent ball games with other siblings or wheel around on her scooter in the adjacent basketball court. I love how Oscar cheers for his favorite players on both teams, watches the umpires and keeps track of the count.  I love rooting for Abe (who is playing with a cast on his wrist and somehow still contributing) and seeing the energy and excitement he brings to the game.  I love it all.

But I do love a quiet afternoon at home, too.

To Not Have Him (Hopeful Parents)

Another month gone by and I haven't posted a darn thing here.  As usual it is not that nothing has happened, it's that too MUCH has happened and that by the time I process one thing and start to write about it I either get interrupted or a new crisis erupts.

I will tell you that Abe broke his wrist playing baseball at a tournament and that when I saw him crouched on the field holding that limp wrist I jumped up and down on the clangy metal bleachers and screamed every swear word I know. Yep, I'm calm in a crisis.  After a couple of nerve-wracking days of uncertainty over what was broken (or not) we landed with a most fabulous hand surgeon, who thankfully did not suggest surgery, but fashioned a beautiful cast with which Abe can still play baseball. I found myself jumping up and down on a different set of clangy metal bleachers a week later when he hit a single and a triple after switching back to righty hitting (after three games of lefty bunting he decided that just wasn't his thing) wearing the cast.  It's amazing he can play at all, and believe me I asked the doctor fifteen different ways if he was sure he didn't risk further injury. 

And I'll tell you that Oscar, that same weekend, performed so beautifully with the Latin American youth ensemble Los Mapaches, leading the group onto stage confidently playing bombo, a traditional drum made from wood and sheep's skin. He sang out earnestly, played zampona, and did his best with the dances.  After the concert, a member of the adult Latin American music ensemble complimented Oscar on his bombo playing and all I could think was "he doesn't know!"  That man doesn't know that Oscar has a disability and that he worked extra hard to learn that complex beat that might have come easier to someone else. He wasn't just being nice. (If he'd complimented Oscar's dancing I'd know he was just being nice). Oscar idolizes the adult musicians and just beamed up at him emitting a barely audible "thanks".

And I'll mention that Ruby's perseverance and stamina on the soccer field is astounding me.  Before this season she liked soccer, but now she seems to love it and runs harder and longer than I thought she could.  Some parents from her old preschool formed an all-girl team this season and she's so thrilled to be with her old buddies again twice a week.  Last week, after playing for nearly 45 minutes without a goal, her team finally scored against a dominating squad.  The girls, all just 5 and 6 years old, immediately rounded into a joyful celebratory circle, red sweaty cheeks pressed together, and laughed and whirled around. I got all teary-eyed as did my good friend B, not because her daughter scored the goal, but I think because like me she saw in that spontaneous celebration how our girls are already understanding perseverance and teamwork and friendship on such deep levels.

So that's a slice of our month.

Today is my day over at Hopeful Parents. I posted an essay I'm working (or should be working on) that I adapted from a blog post here a year or so ago. 

Ready!

I'm really really ready for our trip to Hawaii tomorrow.  We're not packed, but we're close. The couch and the chairs in the living room are covered with neatly folded clothes sorted by kid. One chair holds the long pants and sweatshirts they'll wear on the plane but everything else is shorts and bathing suits and water shoes.  I've chosen small games for the condo, pulled out some markers and paper and books for the plane and even remembered to dig the life vests out of the depths of our garage.

The last time we went to Hawaii Ruby was only two years old and still in diapers. Her hair was really blond then and the freckles that dot her face now had yet to appear.  She spent a good part of the trip obsessed with the song B-I-N-G-O and sang it over and over B-I-ENGINE-O, B-I-ENGINE-O. She cracked up when we showed her a video of her two year old self singing those modified lyrics.

Four years later she still sings as she plays. Just yesterday, while Oscar was in his after-school music class, she and her friend made a cube shaped drum out of large colorful plastic puzzle pieces and beat it with shovels while parading around the school yard singing in Spanish. They sang for an hour, sometimes joined by others, and it made me so happy to see her so engaged and comfortable at school.

Oscar was in Kindergarten four years ago, and the exact age Ruby is now.  I remember that it took days to convince him to try modified snorkeling. I knew he'd love watching the brightly colored fish swim around him but he was resistant. He was scared. When we finally got him out into the bay with a boogie board for support wearing just the mask and not the snorkel he couldn't stop giggling.  He was still anxious, working at the brink of his ability, but loving the experience too. I pulled up this picture last night to show Ruby, very well aware that knowing that Oscar snorkelled when he was only six would ignite her competitive spirit.

This time Oscar can't wait to swim with the giant sea turtles that reside in the bay outside the condo. He's talking about it perseveratively and I had to remind him on the way to school that his classmate who was smooshed next to him in the backseat of our little Prius for the third day straight listening to Oscar's stories about Hawaii might start to think he is bragging.  I switched the subject to today's school-wide book swap and thankfully Oscar transitioned.

This picture also helped Oscar get mentally prepared for snorkeling again.  I can sense a little anxiety creeping up (will the turtles bite my toes?) but having proof that he's done it before, as a teeny little kindergartner, is so helpful to him.

And Abe was only a third grader, just eight years old, when we made this trip four years ago.  He seemed so old then, as he does now, and it makes me wonder if I am inadvertently pushing him too hard to grow up.  (We've been arguing these past two days over responsibilities -- me pushing for more organization and accountability with schoolwork, but is that too much to ask at age 12?  I don't know.)  At eight he snorkeled from a boat out in deep waters, skim boarded on the shore, played paddle ball and shuffle board and catch hour after hour.  He plans to do the same this time, and we've made a pact to try surfing.  We need that time together, hopefully laughing as we fall off our boards, as these past weeks have been full of stress and arguments.

Obviously returning to the same area as before is allowing me to reflect on what has changed in the past four years, and what is the same. I also can't stop remembering that four years ago in Hawaii was the beginning of the six months of dizziness that eventually caused me such debilitating anxiety that I called my primary care doctor one night and asked her to prescribe something, anything, to make it stop. Instead of driving the two miles to the pharmacy to pick up the prescription I walked. I walked and walked those six months, trying to calm my body while the dizziness just increased. Evenutally a brilliant neurologist prescribed vestibular exercises that zapped the dizziness in a mere two weeks. I still consider that one of the miracles of the last decade.

I've chuckled too as I've pulled out summer clothes for this trip. The skirt Ruby is wearing below still fits her. It was too long then and a bit too short now.  The orange hoody and blue Keens that Oscar had on fit Ruby now and the bathing suit that Abe is wearing above still fits Oscar. There's comfort in that cycling of clothes. (And Paul is wearing that shirt to work today and probably on the plane again tomorrow. I'm not a fan of Hawaiian shirts but Paul is and you will likely see one in every picture I post.)

There's comfort too in knowing that we will swim with the turtles in the bay. That I'll walk the sandy path from the nearby crescent beach and over to the next one and up past the new condo development to the more secluded oceanside path to the north. There's comfort in going to our favorite taco shop and the farmer's market and hiking down to the blow hole and experiencing the water bursting up like a geyser through the holes bored in the lava shelf from years of tide and wave action.

When I was younger the thought of returning to the same vacation spot probably would have bored me. But so much in our life now is unpredictable and often stressful that I'm looking forward to visiting a favorite spot and relaxing into the familiar soothing routines. We really need this vacation.

So one selfish wish: Obama, I know you are flying out of SFO tomorrow at the exact time that we are. Please please don't close the surrounding roadways so that we can't get to the airport. I don't mind if you have to freeze the air space for a little (little!) while...but at least let us get on our plane. This vacation means too much to us to miss.

Christmas in Pictures

I was busy this month with the holidays and preparing for our trip east for Christmas...and now it's already New Year's Eve.

Here's a recap of our month...

 Oscar and Ruby visit with Santa. (Ruby's one wish - a candy cane. She'd never had one)

 Christmas tree tied to the top of our old wagon. (In our version of the punch-buggy game Ford Taurus wagons are worth 10 points.) Abe is dressed for baseball tryouts later that day.

 Reading Christmas stories in bed. (And yes, it's so cold in our house that some of us wear ski hats to bed)

Oscar with his "First Christmas" ornament

 Abe wears the Santa hat all over town and even to bed. Perfect for tree decorating.

 Ruby's year to put the star on top

School ice skating trip -- both Oscar and Ruby spent as much time on the ice as possible. Oscar didn't want me to take this picture, he told me later, because his friends were watching, and "it isn't cool for 10 year olds to take pictures with their moms".

Watering the Christmas tree with a tea pot.*

Ruby writing her letter to Santa.* 

 Candy cane at the top of the list.*

 Walking on a frozen pond in Pennsylvania

 On the way to Philadelphia with cousins.

Cousins lined up, watching for the train.

 Christmas Eve at my parent's house.

 Ruby gives Abe a present

Oscar opening a present containing some more of the animals he collects. (He must have hundreds of these now...a clear example of "enough is never enough" in PWS, but they make him SO happy, and hey, it's not food!)

 

Abe excited about a gift

 

Oscar and cousin A. relaxing with A's dog Penny  

 

A blizzard with over two feet of snow in NJ! Abe was thrilled and played in the snow for hours and  hours

Ruby and cousin A jump aboard the sled

Oscar throws a snowball at Paul -- he thought he was so sneaky

Oscar walking Penny the day after the blizzard. He giggled and jogged along.

(Maybe a dog isn't such a bad idea?)

Ruby built a snowman with Grandpa

And Abe dug a tunnel (with cousin A and Grandpa)

We had a great trip, relaxing for a few days with each of our families. Thankfully the snow didn't affect our travel and we are home again now enjoying the last few free days before school and work and all those other responsibilities start up again.  

Wishing you all a Happy Happy New Year!!

* photos by M. Roark

Grandpa took most of the snow photos and many others too!

7th Grade

Do you remember 7th grade?

I do. 

I remember my greasy bangs, prank calls and notes to my two best friends signed in code, folded into triangles, and passed secretly in the locker-lined hallways of my small town Ohio jr. high. Seventh grade was also when I had my first crush -- on the boy who sat in front of me in English class. He had blue eyes, wavy sandy-brown hair, and such a mischievously melting smile that I didn't even mind that he repeatedly rummaged through my little khaki purse with the turtle ribbon trim. We never "went together" but we did swap pictures. (I slept with his under my pillow for probably a year, maybe longer.)

I'm remembering 7th grade right now because Abe is celebrating his 12th birthday today and my living room is completely overtaken by 11 and 12 year old boys sporting sillybandz and skate shoes. They spent the afternoon playing mini-golf and laser tag and then returned here for dinner and what is turning into a rousing game of dart tag in the middle of our small house.  The furniture has been shoved to the corners of the room and they are smiling, yelling, pushing, laughing, chasing, joking, diving.

I can't help but wonder if the girls have noticed them yet. 

Probably, right?

And that makes me feel so darn old.

A Pretty Good Day

Another busy Saturday... Paul's company was sponsoring a shoreline clean-up so he scooted out of the house at 8am with Oscar and Ruby and a collection of buckets, gloves, and shovels. Oscar was a tad reluctant at first and really wanted to know how long they would be cleaning up trash. We made the mistake of specifying an amount of time -- one hour -- so then he was fixated on how that seemed like way too much time. In the end though he had a good time and felt great about all the animals and birds he helped by cleaning up their habitat.

After shoreline clean-up, they joined me at Abe's soccer game, arriving just a few minutes after Abe, who plays goalie, had a big save...and jammed his fingers.  Ruby plopped down on the moist grass and announced that she was going to change into her soccer uniform.  When I looked up from helping Abe with the ice, Ruby was sitting right there on the sidelines in her candy-cane striped panties pulling her white soccer socks up over her thighs as high as she could get them, which was almost all the way.  I wish I'd had the camera.

I scrambled off with Ruby to her game, where she ran around in a tight pack in 4 on 4 competition. This group doesn't play with goalies and is just learning the concept of passing, but the growth from last year in focus and stamina is amazing.  Just before the second half the coach said "I know you're going to score a goal this half, Ruby, whaddya say?" He held his hand up for a high five and she jumped to slap it.  Three minutes later she scored on a long kick through the pack.  She was beaming!

When we finally got home I settled into a cushy living room chair to write while Paul headed outdoors to attempt to tame the garden.  Oscar took a nap, Abe read, and Ruby played in her room.  After his nap, Oscar joined Paul in weeding the front walk and I wandered out a little later to tackle some overgrown bushes.  (These projects are so long overdue that we usually just stand at the edge of the yard, shake our heads, and go back inside.)

Right around 6pm, the time we should have been thinking about dinner, but weren't, Oscar started asking to go to the park to ride his bike.  I was still outside clipping the rosemary and Paul was pulling out a rose bush that had damaged our fence.  Oscar felt strongly and tears started springing out of his eyes as he made his case.  This is not a terribly unusual scene, but what struck me was what he said in the best calm voice he could muster:

"I just don't get why every one else in the family got to do something they wanted to do today except me.  This is the one thing I wanted to do today!"

While he was maybe being a teeny bit rigid, he had a darn good point and he articulated it beautifully.  His siblings probably would have just said "It's NOT FAIR" and stomped off to their rooms. 

So, guess what's at the top of the to-do list for tomorrow?

Oscar recovered quickly from his disappointment and we ended the day eating burritos atop a hill overlooking the San Francisco Bay.  The sun set a bit to the right of the Golden Gate Bridge, disappearing through bands of pink and orange behind the shadowy Marin Headlands.  Ruby and Abe kicked the soccer ball up and down the hill while Oscar counted the dogs and giggled at my silly jokes. 

And Paul said, "Today was a pretty good day." 

Fine

This past weekend was a blur of baseball practices, a kid's "rock" concert, dinners with friends, and a school auction (one of three to attend this month).  Paul left for Brazil Sunday morning, and I let the kids watch two straight hours of Scooby Doo while I finished cleaning our bedroom.  I had no fewer than twenty books piled next to my side of the bed, all of which fall neatly into three categories (essays/memoirs written by mothers, writing, fiction).  Unfortunately by the time I stagger into the bedroom at too-late-o'clock each night I'm too tired to read more than a couple of pages. So the books sit on the floor and on the bedside table and collect blankets of thick dust until the site of it depresses me and I grab a rag.

I allowed the TV on Sunday because we all needed the downtime, especially Abe.  Saturday, after an early morning baseball practice, he came home to an empty house, made a snack, changed his clothes and rode his bike two miles across town and competed in his first track meet. He was the only kid from his school who showed up for the meet.  He waited outside the entrance gate, confused I imagine, until his coach spotted him and lent him the $4 entry fee that I had failed to provide.  When we arrived an hour or so later he had just finished the 1500 meter, running his personal best (6'15") but still coming in last in his heat.  I spotted him from afar -- he was the only one in the huge crowd wearing his school's navy t-shirt and baggy shorts. His hands were on his hips and he was pacing, gingerly, wincing maybe, and blowing air from his red puffed cheeks.  I could read his disappointment from mid-field, but he was rather nonchalant about it when we finally reached him on the opposite side of the track.

We stayed for a bit, sitting on the crowded bleachers in the surprisingly hot March sun, eating mediocre california rolls and watching young runners streak across the finish line. These were serious runners, years younger than Abe, and dressed in sleek tight shorts and shirts, patterned knee highs and those shoes with the spiky cleats on the bottom.

"Real track shoes," Abe said with an uncharacteristic hint of jealousy.

I felt like I was watching future Olympians.  I saw arms pumping with perfect precision, chests thrust forward, cheeks rippling in the wind, heads dipping as they crossed the finish line to grab that extra 1/10 second.  We stayed until Ruby had to pee, until Oscar's friend got politely bored, until Oscar's mouth and back started drooping signaling major fatigue. We'd already carted this troupe to the Dan Zanes' concert up at UC Berkeley earlier in the day and they were starting to melt.

When we left Abe was sitting at the edge of lane six learning how to time the 100 meter dash with his coach who had taken him under his wing.  I whispered through the chain link fence that I'd be back in a little bit after I dropped off the friend, ran an errand, and got Oscar down for a nap.  Abe nodded -- he was fine.   He was totally fine, despite being the only kid from his school, despite knowing no one but the high school coach who was working the event, despite not having any cool running gear, despite never having competed in these events before.  He ended up running the 800 meter (which I also missed) and the 300 meter, breaking his practice record by four seconds.

Paul and I reflected on this a lot this weekend. We wondered if we were pushing Abe towards too much independence, forcing him to take charge of his stuff and his self at such an early age.  On the other hand, he chose the meet over the concert. He chose to stay at the meet when we left.  He chose to run in those events, a newcomer among veterans.

Earlier this week at the dentist I learned that Abe's dental hygiene continues to lag behind that of Oscar and Ruby and that while they can return to six month appointments, Abe still needs to go to the dentist every four.  I was frustrated when I heard this...

...in part because Abe's clearly not taking appropriate care of his teeth
...in part because I'm clearly not helping Abe take care of his teeth
...but mostly because if you have two kids going to the dentist every six months and one going every four months that pretty much means we're all spending way too much time at the dentist.

So I asked the dentist if Abe could come by himself.  After all, he rides his bike to school most days and her office is practically on his way home.

She whispered that technically kids were supposed to come with an adult, but that it might be ok. She could send him home with a report card, as long as he promised to show me.  Of course he'd show me, I promised her.

I asked her then when kids were finally allowed to come alone.  "At eighteen," she replied, "but they usually start at about sixteen". 

Abe is eleven.  ELEVEN.  Maybe we are asking too much of him?  Maybe having two other pretty high needs kids has made me lean too heavily on Abe? Maybe Abe feels that we need him to be independent?  I don't know.  I've been pondering this, and looking for more ways in which I can let him be a little boy once in a while too.  I acknowledge all he is doing on his own and ask how he feels about it all.  He says he "feels fine" and seems a little surprised that I ask.  And when I think about seeing him talk to strangers at the track meet, sitting comfortably and chatting with the adults over appetizers at our friends' house, and especially goofing off with his good pal, I realize he really is totally, perfectly, fine.

Open the DOORS!

I took the kids dress shopping in San Francisco on Tuesday.  I know that sounds crazy -- three kids in a department store -- but I needed a fancy dress for Paul's cousin's wedding in NJ next week.  The boys are ring bearers and will be wearing tuxes. Ruby and the other flower girls will be wearing matching black and white polka dot velveteen dresses with a red bow around the waist.  After much debate Paul thankfully decided to rent a tux as well, but I was going to need something fancy too.  I tried to squeeze into the black taffeta skirt I bought back in, uh, college.  1989?  I shouldn't be depressed about the 6 inch gap in the zipper when I tried to get that thing on.  I tossed out my velvet dresses from my professional days in the early 1990s long ago, but I bet I wouldn't have been able to coax their slim silhouettes above my knees either.

So, off into the city we went, with the promise of BART train rides and ice skating in Union Square after dress shopping.  I did find a dress...one that Abe picked off the rack actually.  (The kids scoured all the racks in the dress department gathering all the black dresses in my size. We collected two armloads and settled into the dressing room for a long fashion show.)   It was pretty painless, if you don't count Oscar practically falling asleep on the dressing room floor and Ruby crawling underneath the doors taunting Abe and Oscar.  But that's all to be expected.

With my sleeveless dress with an embroidered taffeta skirt nestled in the shopping bag we took off for Union Square for a gander at the red and gold ball decorated Christmas tree and the outdoor ice skating rink. On the walk there Abe asked me repeatedly if the ice was real -- a reasonable question because it wasn't exactly cold outside and because four years ago we went skating on plastic "ice" at a different shopping center here in northern California. It was horrible. 

The ice in Union Square was real and the rink large enough but the lines wrapped around the temporary building.  One line was for ticket holders -- those organized people who pre-purchased earlier that morning or online. The other sad line was for people like us -- anxious kids and exhausted parents who realized the journey through this line to buy tickets and then back through the other was a two hour ordeal. Ruby scampered up on top of the adjacent wall in her black and ivory Christmas dress while Oscar stuck to my side asking repeatedly "So are we going skating? How long is this line? When are we going to get in there?"  It was the kind of anxious rapid-fire questioning that doesn't allow time for me to answer, and my answers, if not carefully crafted, can lead to higher anxiety levels.  I can't think when Oscar is asking questions like that so I usually ask him to calm his body while I come up with a "plan".

The "plan" was to blow off the skating. Maybe come back over the weekend, with Daddy, with pre-purchased tickets in hand. Oscar and Ruby were on board with that plan but Abe's enthusiasm turned to a sulk and my guilt over dragging the kids all the way into the city just for dress shopping overwhelmed me.  I tried to salvage the morning by suggesting we head across the street where there was rumored to be a giant gingerbread house displayed in the Westin St. Francis Hotel.  The rotating "sugar castle" turned out to be so huge and so professional looking and not at all ginger-bready that none of us believed it was actually made of gingerbread until I read the sign. Twelve hundred pounds of gingerbread, 60 pounds of flour, 300 pounds of sugar, 400 hours of work...it was certainly real.  When I spotted a few missing gum drops along the surrounding train tracks the kids finally believed me (and wanted a gum drop, of course.)

We spent maybe three minutes looking at that marvelous sugar castle and then started on a quest for a lunch spot. The streets were crowded with shoppers and holiday cheer seekers and it was hard to keep track of the kids. Ruby kept falling behind and I was so glad I topped her dress with her cherry red fuzzy jacket, the one with the hood and large pom pom buttons. Aside from being adorable on her it was easy to spot her little body among all the dark pants and tall boots on the sidewalks.  Abe was voluntarily keeping an eye on Oscar which sometimes meant grabbing his arm and pulling him out of the way of oncoming walkers. Oscar was getting mad at Abe and Abe was frustrated with Oscar.  I beckoned Abe to the side and gently told him that I could keep track of Oscar. Oscar was fine. He was keeping up ok and yes sometimes he didn't notice people walking directly into him, but he was fine.

After much more grumbling and whining we found a decent lunch spot -- a yummy mexican place where they serve warm tortillas with salsa and make guacamole right at your table. Abe's mood improved with food in his belly and I felt like I had partially salvaged the morning. After lunch we headed down to the BART station.  As we went through the ticket gates we heard a train approaching and rushed down the escalator to catch it. It wasn't our train, but an eastbound train arrived on the adjacent track a few seconds later.  I wasn't sure if we wanted to take that one either because I didn't know where we would have to transfer. After a second's hesitation we got on anyway. I figured that we could get off at the next stop if needed.  As the doors started to close I realized that Abe had just barely jumped on the train in time, but that Oscar was still on the platform. We tried to stick our arms out to stop the doors but they closed anyway leaving me, Abe and Ruby on the train and Oscar on the platform, alone, in downtown San Francisco.

I started screaming:

"OPEN THE DOORS! OPEN THE DOORS!"

Abe and I pounded frantically on the doors and I looked desperately around the BART car for an emergency lever but I'm not sure I would have left my post at the door even if I saw one. Ruby stood up on the seat and screamed in panic.  I remember being worried that if the train jolted forward she would go flying. Other passengers jumped up and started yelling and banging too. Oscar was frozen. His arms were at his sides (not flapping wildly like when he is upset) and his large brown eyes were wide with fear.  Someone must have found a switch, or a lever, or a call button, because after 10 seconds (you could convince me it was two hours) the doors parted and I pulled Oscar into my arms. 

The other passengers fell back into their seats with relief and I huddled at the knees of my kids who had scrunched into the two cushion seat reserved for people with disabilities.  Ruby kept screaming so I held her while I talked soothingly to all of them. Oscar was still somewhat frozen, but he did say "I was really scared Mom".   "Of course you were sweetie, of course you were!",  I replied, and I pulled him in for another hug.

Ruby was scared too, and it took her a long time to recover.  She begged me to carry her on and off the trains as we transferred in Oakland, and then off again at our station.  She also awoke that night with a nightmare about being left behind on the platform.  She didn't want me to leave her alone in her room.

I was scared too, but my heart didn't race, my legs didn't turn to jelly.  Despite my screaming and banging I was pretty calm inside. And I can't figure out why.  Was it because Oscar wasn't outwardly panicked? Was it because I just couldn't believe the train would pull away leaving him there? Did I not have time to process? Or is it because we have already been through so much that this seemed small in comparison? 

I do think I knew on some deep level that he would be ok, that he wouldn't try to hold onto the train as it pulled away, like Ruby might have.

I think I knew he wouldn't get on the next train that pulled into the station, like Abe might have, but that he would stay right there waiting for me.

I think I knew that we could just go one stop and then hop the next train back. We'd be back in just a few minutes, ten tops. He's nine. He would have been fine. I keep telling myself that is why I didn't panic. 

And maybe I was also in a state of disbelief that I let this this happen. I should know better. 

He is nine, but he has PWS and he just doesn't react quickly in these situations.  I should know better.

He gets overwhelmed in crowds and new places. I should know better. 

Next time I will know better.

We are all fine now, even Ruby.  And we've spent a lot of time talking about what to do if you get left behind on a BART platform. Not that it will ever ever happen again.

More talk

We're just all about talking about disability here these days.

After dinner tonight, as Abe was empyting the dishwasher, he casually asked me if I knew what the chances were of someone being diagnosed with autism.

I knew it was high, but couldn't remember exactly. "One in 100?" I guessed. "One in one hundred fifty," he told me.

He saw a commercial on TV by Autism Speaks that caught his attention and was wowed by the high incidence. I wonder if he would have paid attention before we read Al Capone Does My Shirts?

Next he asked when we found out Oscar had PWS.  The answer rolls off my tongue easier than my own birthday. "We learned about PWS for the first time when Oscar was just five days old. The diagnosis was confirmed when he was two weeks."

"Hmm", Abe mused. "So he got it after he was born?"

"No, it happened in utero, when he was still inside me."

"So, you did it?"

"Well, kind of, but not really...." And then I launched into a discussion of how my egg had two chromosome 15s by accident and Paul's sperm only had one, as it should.  We talked about how the wrong chromosome 15 (Paul's) got kicked out, leaving Oscar with two maternal copies, and thus PWS.

I told Abe that Oscar would probably not have survived if one of the chromosome 15s hadn't kicked out. He would have had trisomy 15.

A shadow fell over his freckly face and he looked up at me from where he was chucking tupperware haphazardly into the cupboard.

"Wow," he said, "That would have been really sad. To not...have him."

We both got quiet then.  I felt my throat tighten and my eyes well up, again. Because Abe does love Oscar so much. And because I remember that when Oscar was really tiny I was looking for any way out of what I considered to be the horror of PWS.  I remember being pretty angry that the wrong chromosome kicked out...and also that any chromosome had kicked out at all.  Back then I was pretty sure a miscarriage would have been a hell of a lot better than PWS.


Later as I was putting Oscar to bed I read him some math problems that I made up for him today because he had to leave school early and didn't get his homework sheets.  I called it "Zookeeper Math" and there were four word problems on the sheet. We never got around to actually doing them, but I knew he would enjoy hearing them, because, you know, he's going to be a zookeeper when he grows up.

This one was his favorite:

Zookeeper Fred needs to feed the giraffes. He brings 7 acacia tree branches to the giraffe exhibit. But when he gets there he sees that there are 12 giraffes in that exhibit. Silly Fred!!! How many more acacia tree branches does he need to go get?

By the time I'd read all four word problems, Oscar was giggling so hard I thought he was going to have a cataplexy incident.  He hasn't had one in a long time...and they don't worry me like they did when we thought they were seizures. These days they are just a sign that he is really enjoying a joke or a story.

I teased him them. "You love your Mama, don't you Oscar? You love your Mama!!"

Oscar just kept laughing, unable to stop, while I pulled the covers up higher and dotted kisses all over his cheeks and forehead.

Siblings

Abe and I finished Al Capone Does My Shirts last night. A great book with a great ending.  We had a good discussion afterwards too, the kind that had both me and Abe in tears. I spent a good while writing about it here last night, but it's just not appropriate for my blog without Abe's permission. I can say I learned about the depths of Abe's love for and commitment to Oscar....and about how moving onto middle school where no one knows Oscar isn't as straightforward as I would have thought.  He is thinking about his own boundaries and requirements for new friendships.  There was a certain comfort for Abe that came from sharing a small elementary school with Oscar, where everyone knew.  So, even though Oscar isn't at the same school anymore, he's there affecting the way Abe looks at his world.  Of course. I just didn't get it before.

And then today, on the way up the hill to her preschool Ruby started talking about Oscar too. Abe was about the same age when his questions about Oscar and disability really ramped up.  Ruby is annoyed, frustrated, and perhaps even grieving a little.  Having been down this road with Abe, who was angry and sad at age 5, I'm remembering that siblings are processing the disability at their age appropriate level and that, in a way, their grieving is more prolonged because they continue to grieve as their understanding matures. We adults can get the whole picture faster, but little kids grow into their understanding.  For now, Ruby is grieving the brother that doesn't "play farm" with her the way she would like, the brother who talks funny and chews with his lips open.  All I can do is listen, and maybe gently remind her that Oscar is trying, even when it seems like he isn't because everything is just so much harder for him.

Mostly, I want her to know she can feel anything, say anything to me.  Over the years, with a lot of hard work, Abe and I have developed great communication and trust...but Roo is a different kid.  This morning I definitely had that feeling of "here we go again..." but that's not really true. I don't know what Ruby's path to understanding Oscar and PWS will look like.  All I can do is support her along the way.

And of course, I'm looking forward to getting to read Al Capone Does My Shirts with her in six years or so.

Two Books

I plowed through Joan Ryan's The Water Giver this weekend in Tahoe, reading in the car, curled up in the bean bag by Abe's fire, on the deck in the cool fall air, and in bed late into the night.  It's the story of a mom getting a second chance at being a mother when her teenage son suffers a traumatic brain injury.  I keep thinking Joan Ryan is being just a little too tough on herself regarding how she parented her son before his injury.  I see myself in her parenting style both before and after the accident, so maybe I just need the validation that as imperfect as I am, I am doing the best I can.  To me, it seems like she was! Anyway, it's a beautifully written book and I just couldn't put it down. It got me thinking again about how I might write my story of becoming Oscar's mom. I have so much trouble getting started, always, because I don't know where I am going.  I've started now, every so barely, and I just need to keep on writing without having it all figured out. I'm hoping that will get clearer as I write.

I'm in the middle of my second writing class...another wonderful experience -- this time with Susan Ito. Once again there is more to read and write than I can manage, but my faithful interest barometer is telling me that this is what I want to be doing, even if there are so many distractions, always, in my life. I'm trying to learn to be patient with myself but I'm also going to try to get back to my Oscar story for my next workshop. I sidestepped that a bit and wrote about Ruby for my first workshop last week. I was so unhappy with that piece, to the point of run/walking for a few miles unable to think about anything but paper shredders.  Interestingly I cared less about sending it out to the group (a super encouraging group of writers led by Susan) than I did about how I felt about it, how it didn't say, yet, what I wanted it to say, how I wanted to say it.  In the end, though, with the great suggestions I got, I think I might go back to it eventually, or fold it in to something bigger about Oscar.  In other words, I survived.

The other great book I am reading is a kid's book -- Al Capone Does My Shirts, by Gennifer Choldenko.  I am reading it aloud to Abe.  It's been sitting on his shelf for three years now, ever since my friend who also has a child with PWS got it for her older daughter.  He wasn't ready for it then, but is now and keeps reading ahead of me.  He listens again while I read aloud the sections he's already read, so I think he's enjoying it as much as I am.  The main character, Moose, is a 12 year old boy who lives on Alcratraz in 1935 with his parents and his sister Natalie, who these days would be diagnosed with autism. It's intense at times -- Moose's mom is set on trying everything she can to help Natalie, so their world revolves around her needs.  Moose is forced to give up his own interests and often ends up in charge of Natalie while his Dad works two jobs on Alcatraz and his mom teaches piano in San Francisco.  Moose's love for and shame about his sister are authentically written and I am sure Abe can see himself in Moose.  (Certainly helps that Moose is also a baseball fanatic!) Moose shoulders way more burden for his sister than I ever intend for Abe...I'm trying to feel Abe out about this, but I think he is still processing. I wonder if there is a guide that accompanies this book, or suggestions for dialogue somewhere. Usually Abe and I can have some frank discussions about disability and siblings...my rule has always been that he can say anything to me, but just not in front of Oscar.  I hope this is a book we can go back to, if he's not ready yet, and talk about later.  In any case, I like where I see this book going in terms of an emerging acceptance and support of Natalie by even this mostly unlikely community on Alcratraz.

11 years

Eleven years ago today I heaved my swollen body out of our green Ford Escort wagon and waddled up Solano Avenue with Paul and the crowd, stopping to listen to musicians, sampling the spicy fare at ethnic food stands and browsing the booths of local artisans. The 2nd Sunday in September is always the date of the Solano Stroll, a street fair that extends 1.2 miles and spans two cities. On that Sunday in 1998, I was 9+ months pregnant, and three days past my due date. Stimulated by the long walk and all that spicy food, Abraham decided to start his campaign that night and finally arrived 20 hours later on the evening of September 14th.

Now, 11 years later, I watched from the window as he left the house armed with just $10 and his cell phone, off to meet a friend at the Stroll. He was reluctant to leave the house at first...dragging a bit from our already busy day. But once he and his friend agreed by phone on a meeting place, his pace and mood picked up. I could see his energy change from my post at the window.

Eleven years later, then, I am still pushing him out, though with less fanfare and pain. He walks or bikes to school now, meets up with friends in public places, and shops for groceries at our local market. Sometimes he needs a nudge toward independence, but mostly he's ready for this freedom and is responsible enough to have earned it.

And while I'm helping him gain independence, I'm also holding him close, aware that he's growing up quickly. After the "little kids" go to bed, we've fallen into the fragile habit of a nightly chat. We sit companionably in the family room....me with my computer, he with his book. I'm always poised for conversation but don't want to appear overly eager so I wait for him to initiate.

He talks mostly about middle school. His transition to the bigger more chaotic environment has been stunning. New friends, new sports, new confidence and calm. I've trained myself to relax noncommittally into the cushions whenever his enthusiasm peaks or frustration rears and listen calmly and openly. I'm trying to say "hmmm" and "oh" a lot, even when I want to say "WHAT!?" or "WOW!" because I've heard that "hmms" and "ohs" are more likely to earn you a seat on your child's "advisory board".

I'm relishing his maturity and openness and wondering how long he'll let me stay in this inner circle of his thoughts.

Hopefully another eleven years....at least!

Middle School

Abie's off to middle school tomorrow. After 5 years in a really small elementary school, he's moving on to the largest public middle school in Berkeley.

Three hundred 6th graders. Ten 6th grade classrooms.

Back in March when we were in the midst of the big school decision I wasn't so sure this school was the right fit. I thought it was too big and way too hectic. Even the kids were huge. I was worried about the large classes, the standards pushing and the lack of art and music. When I observed lunch recess it seemed to me that the kids were all voluntarily divided by racial background and that really bothered me.

But, when Abe observed recess he said "Mom, I like that its big. I like that there are lots of different groups of kids. It looks like there are lots of ways to be cool here and that makes me feel comfortable."

I liked his viewpoint. I loved that he was so observant and knew what he needed for this next step.

That was months ago and the stress of the decision has long since passed. The more I hear about this school the better it sounds. Terrific programs, awesome teachers, great kids. I am thrilled that he can walk or bike there, and that he knows kids from baseball and from around town who are going. It's the home of the famous Alice Waters' Edible Schoolyard. Abe's read up about the garden, tried some of the recipes, and can't wait to work in that gorgeous school kitchen. We also just found out he can play his electric guitar in the 6th grade band.

It all sounds great....except I feel like we're sending him off to college. Between before-school band, and after-school sports, I feel like I'll hardly ever see him again. Plus with a nearly 9 year old quirky brother that still naps and a little sister who could be Dennis the Menace's twin, I doubt he'll be begging to bring kids home. So, these last few days, I keep filling him up with advice just in case he really doesn't come home again. Strangely, he seems to be listening.

Things like, "So, Abe, if someone says hi, remember to smile and say hi back...If you mumble or don't look up, kids will think you don't want to be friends."

and

"Find your baseball friends and hang out with them. They'll probably be with other kids from their elementary schools, but don't let that stop you. I'm sure those kids are nice too."

I sound like an idiot. What do I know about the middle school social scene? I spent those years peering out from behind greasy bangs, trying to figure out what was so cool about Gloria Vanderbilt jeans. (It was the stitching, and at my school it had to be gold). My brand new Sears denim skirt did not cut it.

My nickname during those years? Scary Mary. Seriously.

Yea, I should probably keep my advice to myself. He's going to be just fine.

Baseball Fever

It would be perfectly understandable, after five baseball tournaments and never progressing past the semi-finals, if Abe started to get discouraged. He's been playing baseball nonstop since February, first with his regular league team, and then this summer with All Stars, and now with his tournament team, the Thunder. We're at tournaments most weekends, and some weekdays too. And when they don't have games, they're practicing, up to three times a week. More for Abe if you count the two weeks of baseball camp and a couple of extra private sessions. They've won games, many games, but they've never won it all. Despite all the hard work, the excellent coaching, and the deep pool of talent, they seem to always lose in the semis.

Today, though, I witnessed something really hopeful, something way more important than getting to the finals. Something I'd been waiting to see. The Thunder came back from being down 1-3 to tie the game and then win 4-3 with a walk-off single in the bottom of the sixth. I was so proud of them all, and their perseverance. It would be so easy at age 10 or 11 to get discouraged when you're down by a few runs. But today they stuck with it, battled hard, and won the game that deservedly landed them in the semis. I jumped up and down on the metal bleachers, screaming "I'm so proud of you THUNDER! Way to stick with it". I'm pretty sure Abe was too busy celebrating with his team to notice his kooky mom. At least I hope.

Abe didn't hit well this weekend. I didn't keep close track, but he did of course. "Four pop-ups today, Mom" he said as we got in the car. "All I needed was a ground-out (his specialty) to bring in a run, but I couldn't even do that." I reminded him that last week he was striking out a lot and that he didn't strike out once this weekend. He battled up there, forcing the pitchers to throw him a lot of pitches. Sometimes runners even advanced. And he really excelled at catcher in his first full-running tournament. But he's not satisfied.

Let me be clear --while he's not happy about his hitting, he's neither tired nor discouraged. If anything he's even more motivated. His first words, upon leaving the dugout after the 9-1 loss in the semis, were "Can we please go to the batting cages? I really want to work on my hitting." He was enthusiastic, almost cheerful, despite the loss not 10 minutes earlier.

And tonight, after returning from a marathon wii baseball tournament with friends, he walked in the front door and immediately asked Paul to throw him some wiffles in the backyard.

He's in a great mood, full from all the baseball (the wins and the losses) and fun times with great teammates. No, he's not discouraged...he just wants to get back out there and play.

Even as I type, he's standing in the living room throwing phantom pitches, and demonstrating the full concept of a "balk" to Paul. And I just heard them make a plan to hit the batting cages at 7:30am tomorrow. Abe's not an early riser, so this is serious.

I was talking with another parent this week about how baseball is really a metaphor for life. Whether they win or they lose, these kids are learning so much about working hard at something they love, about learning from and then letting go of mistakes, about supporting a teammate in a slump or in a streak, and about respect for their coaches, the umps and their opponents. I never played on a team as a kid, but I think if I had I wouldn't have been so afraid to mess up every once in a while. I might have learned to persevere even if I wasn't particularly good, just because I loved it. Abe is good, but what matters even more to me is that he loves this game and he keeps asking for more opportunities to play.

I'm afraid to break it to him that he starts basketball camp tomorrow.

A Very Cool Kid

Yesterday I found myself in a conversation with the manager of the pool we belong to about Oscar's swimming ability and whether or not he should be allowed in the shallow section (a.k.a. the baby pool). He was in the process of kicking Oscar (and Abe, and all the other big kids) out when I approached him. Oscar was sitting floppily on the steps. He had just finished his lesson and was pooped.

Before I knew it, this guy was describing Oscar's "look" to me. He referred to the way Oscar's goggles slip down making his ears stick out and smooshing his eyes. He swept his hand over his own face in a downward motion to indicate Oscar's low affect. While I was the one who mentioned that Oscar had special needs (and therefore should be allowed to stay in the shallow area since he could not yet swim a lap)...I was still somewhat offended.

Today, at Target, Abe got Oscar to try on some mirrored sunglasses. He had chosen a pair himself, needing something for his evening baseball practices and games when the descending sun can be so bright and distracting.

I debated about whether to let Oscar get them. They were $20. And they will get lost or broken. But, with these on, Oscar's low affect looks purposeful, even cool. And so I bought them. Because he is, you know, a very cool kid indeed.
And, for that matter, so is his big brother.

ps. the manager only had Oscar's safety in mind. he was letting me know he had noticed Oscar swimming in other areas of the pool. he was not, i don't think, intending to be disrespectful.

I'm still here!

I've been quiet on my blog lately. There is just too much going on.

Some triumphs: The Los Mapaches concert was Saturday in San Francisco. All three kids performed! Abe sang out and actually moved his body to the beat. He played guitar for the first time on several numbers, drum on another. He looked so happy, so confident up there. Oscar's stage overwhelm is gone. He was "on" the whole time, and his face, while singing, emanated a beautiful mix of passion and sincerity. He led one song on stage with the bombo, helping to keep the beat for the rest of the musicians. And Ruby was a ham. She made sure each one of the 300 people in attendance noticed her as she sang, played zampona, and did the motions. What a night!

And some struggles: Oscar's IEP was also this week which is always a source of major stress for me. (Placement has historically been very very hard-fought.) This year was smooth but no one could tell me beforehand that that would be the case so of course I went through all the pre-meeting anxiety and post-meeting decompression. Abe's been having a very hard time at school. We're so sad, but also proud of him for how he has been keeping his chin up and continuing to try. I wish the last weeks of his elementary years could be sweeter but I also know that it is a gift of sorts to be ready for the next adventure. He is. I just wish he could take his 5th grade teacher with him to middle school. Oscar's stuttering is at an all-time high. He can stumble over one syllable ten times before he gets it out, his face contorted with the effort it requires. I love though that he can calmly admit that he is frustrated and I can reassure him that it will pass, because it always does. I feel blessed (and if you know me you know I rarely use that word) that he has the ability to converse so maturely. Finally, Ruby's tantrumming peaked last week to the point where Abe stood by my side and told me in a soothing voice that he had seen what happened. I was crying but I am not sure why. Because I don't always know how to help my 4 year old when she rages, or because my 10 year old can step out of his pre-teen fog and angst to validate my experience?

I am ok, just drained. PWS walk and 5th grade play this weekend on top of all the baseball games and practices that are the respite in our busy life.

A Wonderful Day

Today is my birthday -- number 41! It comes with less dread and drama than 40, and also more wisdom, for which I am glad.

I was determined to make it a day I would enjoy, which included leaving a day early for our long weekend away at Sea Ranch on the northern California coast. I knew that spending my birthday waiting for Paul to escape work and then driving 3 hours in the car with three children and unpacking was not how I wanted to spend my day.

So I packed up the youngins yesterday and we trekked up here on our own, knowing Paul would join us as soon as he could. We meandered a little along the way, finding a little gem of a lunch spot in Jenner. Picnic tables right on a bay and homemade clam chowder!

I love these pictures of the boys eating their lunch together. It warms me to know they can get along so well. It requires a lot of patience from Abe, but Oscar's innate enthusiasm and curiosity are also just good companions.

Of course there were a few mini-struggles along the way...the biggest being Oscar’s immobilizing stomachache in the grocery store in Gualala. I remembered that the last time he'd had such an attack we landed swiftly in the ER. (Most kids with PWS don't get stomachaches and if they do it can be a sign that something is seriously wrong.) I stayed calm and hoped it was gas. I hoped that a bowl of creamy clam chowder was enough of a departure from his normal diet that it alone was the cause, and that it would pass, literally. Thankfully I was right. I did look up the nearest hospital later just in case.

When we finally did arrive at our house, Abe dove in to fire-making, experimenting with different ways to arrange the logs and our store-bought kindling in an attempt to produce a viable fire.

He was not successful, but also not deterred. When I woke this morning, luxuriously late at 8:30am, he had a fire blazing.

He had also made the pancake batter and was flipping the first batch. He wanted to make me pancakes for my birthday. While Abe was busy with fire and pancakes, Ruby and Oscar had made cards, which they proudly presented to me. So very sweet! The first is Oscar's and then Ruby's.

We ate our whole-wheat banana pancakes on the floor by the fire, listening to the Winton Marsalis CD that I had found in a cabinet. It was raining when we finished breakfast, but that didn't stop us. All 3 kids raced to get their suits on when I suggested we try out the hot tub. We stayed in for a loooong time. It was lovely to be so fun and spontaneous with the kids, and not distracted by paperwork, insurance, emails and appointments. And I think it was all the sweeter knowing that we leave next weekend for our 5 day hypophosphatasia study at Shriner's Hospital St. Louis. (more on that later...)

Paul arrived at 4pm, just in time to get settled and make us a drink while we started on dinner. Abe wanted to make burritos, and had looked up an authentic recipe for mexican rice on the internet before we left Berkeley. Here are his ingredients, all pre-measured and ready to go.

Paul brought me the cards that arrived in the mail (including a beautiful one from my wonderful friend W) and gave me a small gift of chocolate from the new shop on Solano and this perfect card.

It was a wonderful day that I didn't think could get any better. But, as we were finishing our burritos, the rain stopped and there was a hint of clearing to the west. We threw on our jackets and shoes and headed out on a walk. We wanted to check on the baby seals we'd seen on the beach the day before.

Below is a picture of our rental house from the path. (It's the closest one). Sea Ranch is a private community stretched along 10 miles of coastline just south of the Mendocino County line. There are miles of private trails and a few public paths and many beaches. We've never been here before so we are enthusiastic explorers.

Ruby ran most of the way down the trail toward the shore, excited to be outside after a long day of rain. We stopped at Shell Beach, where the jagged rocks, the waves, and the briny ocean breezes made me feel like I was home at last.

Ruby was excited about the many-shaped rocks she found.

To the north just slightly we saw a hint of pink in the clouds, and headed off to the bluff where we had spotted the seals the day before, hoping for a sunset. The kids took turns taking pictures on my iPhone and we alternated between long glances to the northwest where we indeed were gifted a beautiful sunset and below us to the south where mama seals and their pups nursed and cuddled. These were moments to cherish and we lingered as long as we could.

We raced back home along the path as the light faded. As promised, we hopped into the hot tub for a quick pre-bedtime soak. I placed votives all along our deck railing and we watched the last hints of pink fade to gray. The steam from the hot tub mixed with the low light of the candles and created a mystical atmosphere. It was just that kind of day. I felt lucky, I felt loved. I am grateful that we could escape like this, to catch our breath for a few days, before real life and all the accompanying responsibilities resume.