BIG news!

I'm in the middle of about 3 posts. So little time with Paul in Brazil these last two weeks and me holding down the fort (and attending all the back to school events) alone. I'll get to finishing those stories soon, but couldn't let this day pass without announcing the big news:

Oscar learned to ride a bike today!

I was in the middle of an email to a mom of an infant with PWS (trying to remember, ironically, when it was that Oscar could finally hold up his head) when I got the phone call. Paul, who arrived home yesterday, had taken Oscar and Ruby to the park to give me some time to catch up on a few things, and apparently they took bikes. It's something Paul tries with Oscar every six months or so, but as far as I knew he'd never gotten close. His balance reactions were slow, his motor planning a bit off. I'd pretty much given up on it ever happening without some huge intervention. In fact, I've been keeping an eye out for another trail-a-bike so we could do family bike rides again. I figured we'd get a tandem some day. Tandems are cool. I was totally ok with him never riding a 2 wheeler bike.

So the call came as a surprise. I threw on my flip flops, hopped in the car and raced to the park to see for myself. And sure enough, he WAS riding a bike. Look!




I dissolved into a puddle of hysterical laughter and tears. Paul squatted down in front of me and wrapped his arms around me. His eyes welled up too.

So great are the joys. So high are the highs.

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!

Transitions

I've been thinking a lot about transitions lately. Seems everyone is posting about them in some way or another and I too am struggling with my own end-of-summer back-to-school blues. I'm actually excited for school to start (two down, one to go) and to finally get some time to think, exercise, organize, write. Instead of elation, though, I feel burdened. Three schools worth of forms and meetings, a computer that crashes twice a day, a tweaked shoulder, a needy preschooler, a dripping faucet, a half-dead frog (must buy worms tomorrow!), a sad weedy garden, and oh, a husband in Brazil for two weeks.

Then there are all the doctors' appointments that I shelved for the summer and will have to schedule for this fall. Two endocrinologists, three pediatricians, one orthopedic surgeon (or maybe two), a periodontist, a dentist, a radiologist, a psychiatrist, an ophthalmologist and a nephrologist.

There's also another transition going on -- one of hormonal changes, disrupted digestive systems, acne, thinning hair and weight gain. I keep thinking I am too young (or too old?) for this, but we all know what chronic stress does to the body.

None of it is earth-shattering. Little of it is new. But it's dragging on me like bowling balls in my pockets.

My sister-in-law is being ordained a Priest in the Episcopal Church in NYC this weekend. We were there in March for her ordination to Deacon, but are sadly missing this weekend's momentous event. I called her tonight, to wish her well, and to get the scoop on the final preparations. She's preparing her remarks for the post-ceremony brunch and mentioned that she's going to end with a prayer about transitions.

I'm going to have her send me that prayer. And then I'll post it here.

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.

Shining

When Oscar was first born (and for many years afterward), vacations, especially those to the east coast to visit friends and family, were very difficult for me. I often felt like there was a spotlight on Oscar, on Prader-Willi syndrome, and on us. I know I often created this spotlight myself with all my blabbering, but I felt like it was necessary to explain PWS, our food routines, Oscar's sleepiness, his lack of affect, his various delays, his behaviors. I got tired of hearing my voice drone on, but kept talking anyway, and was exhausted by vacation's end. And since we only saw some of these relatives one or twice a year I also wanted to show Oscar off....and, yes, I admit it, I wanted him to shine.

The thing is: Oscar does not shine on vacation. Countless transitions, disrupted sleep, uncertainty about the schedule and food often combine to make for an even more zoned out, inflexible, anxious, perseverative, and tantrumming boy. He ends up spending time alone, or with the adults because it is just too hard to keep up socially and physically with the other kids. Usually I start counting the days till we get home and back to our "normal" only a few days after we've arrived, because seeing him in that exacerbated PWS state is just so painful.

As we packed for this big trip east, I reminded myself of these challenges...and was finally at peace with who Oscar usually is on vacation. I decided to let it go...to accept what comes. That it's ok if he falls asleep at odd hours, is sluggish, has loud stomping tantrums, opts out of activities, or doesn't play with the other kids. At home he is working hard all the time. He probably needs a vacation too, I thought. A vacation from trying to keep it together all the time.

But that's not how this vacation turned out. Sure, all of the usual things still happened. But they happened less and Oscar was just a bit more in the middle of things. He tried new activities, he played with the other kids more of the time. He was funny, perceptive, kind and articulate.

In Sea Isle, he "disappeared" soon after we arrived, causing me a moment of panic. I found him out riding the surrey around the block with Abe, Ruby and their cousins. This was our first clue that this vacation might be different.

He spent hours making colorful star and circle and square perler bead creations at the big kitchen table with all of the other kids. He shared beads (except with Ruby, but she eggs him on so that doesn't count), and didn't freak out when his design got bumped and the beads scattered.

He insisted on going running with Paul, and lasted a mile in the 90 degree weather. He went swimming in the OCEAN and learned to jump over the smaller waves, and duck under the big ones. And then he rode a few gentle baby waves back to shore. He scootered on the boardwalk with the other kids, enthusiastic and energetic the whole time. As we struggled to follow along in our ill-chosen flip flops, Paul puffed in my direction, "He's actually keeping up!"

In fact, all vacation long, Paul and I just kept looking at each other, wondering if we were fabricating this change. Was our hope and love for Oscar clouding our perception? Did letting go of expectations allow us to see Oscar in a different light? Maybe, except everyone else noticed too. And he kept it up when we headed north to Connecticut.

There, instead of waking before dawn and slipping into bed with his grandparents, he slept later (yes I fiddled with the clock again) and then read till the rest of us were awake. Or played Wii with Abe. For a couple of days I left out math or phonics workbook pages for him to complete before playing Wii....and he DID.

He spent two days with his cousin Audrey, playing nicely with her, when I went to New Hampshire. Apparently they talked and talked, about animals, of course.

He disappeared after dinner one night to play Sorry with the other kids in the loft. Again, I was surprised to go looking and find him playing in a group and not alone. On a different day, when the rest of the kids wanted to play croquet, he asked me a few questions about the game and then said, unprompted, "Well, I think I can stay in the game. I want to play."

At the local amusement park, he asked to go on rides that I never thought he'd want to try, like a roller coaster, or flying tea cups. "Who IS this kid?", I kept thinking. (And, less enthusiastically "am I going to have to start liking amusement parks?")


He was stretching himself in so many ways that I decided that I was going to "help" him swim in the lake in Connecticut. He loves the pool, but there's something about the lake -- not being able to see through the water perhaps -- that was making him resistant. So one day, towards the end of our vacation, I zipped him into his life jacket and told him he could jump or I could throw him in. His choice. He wasn't happy, but I kept it light, and he was laughing despite himself. I picked him up, all skin and bones, and gently lowered him. When he got back up on the dock, I tossed him back in. And then I let him push me in, which was, of course, hilarious. He was a little mad at being coerced, but he got back into the lake voluntarily and swam around, even venturing away from the dock, with the other kids, to climb on Grandpa in the inflatable tube. When it was time to dry off, he asked if we could go swimming again the next day. (Of course it stormed the next day)

And on our last day, Abe, with his special sibling connection, somehow convinced him to try tubing. Oscar sat in the front of the tube with Abe right behind. We attached their rope to the motor boat and started off slowly, very slowly. Every couple of minutes Abe would give me the thumbs up sign to indicate that Oscar wanted to go faster. His grin grew wider with each increase in the boat's speed. My own cheeks were sore from smiling so much that I had to take a break and think of sad things to rest my face muscles.
That night, I asked everyone to share their favorite memory of this vacation. Abe shared that he loved learning how to water ski. Audrey shared that she liked watching Abe ski, which was very sweet. Oscar usually passes, especially in larger groups like this. But he piped right up with, "Well I have three great memories of this vacation. I liked going to Action Wildlife (a little zoo). I liked when all the other relatives came to visit, and I really liked going tubing." While no one dropped their margarita, we all noticed. (Ok, I was stunned.)

I don't know why Oscar was so freed up to enjoy himself and to try new things this vacation. But that's how he seemed -- free, unencumbered, and happy. He shone from the inside out.

And somehow this all makes me a little sad. It is only in times like these that I wonder who Oscar would be if he didn't have PWS. I know that Oscar has been shaped and made stronger by PWS: his perseverance and kindness most certainly are a result. And I know that I appreciate his every success and milestone a whole lot more because he has PWS and works so hard for everything. But still, I wonder.

I wonder too how I will always provide him with interesting opportunities within the confines of the disorder. Will I always be able to frame and scaffold so that he feels good about who is and what he can do?

Will he be happy just volunteering at a zoo, and not being a "real" zookeeper?
Will he accept that he can't ever be in charge of his own food?
Or live independently?
Or drive a car?
Or have children?

I try to remember to just think about today, because during those first years after his diagnosis when everything about his future was clouded with uncertainty and fear, it never occurred to me that he would be the happy, confident, capable kid he has become.

It never occurred to me that I would care less about him shining to impress others and reassure me, and care only about his lovely spirit shining through the encumbrances so that he can enjoy his life.

Interruption

I'm interrupting my vacation silence because --

It occurred to me last night, as Ruby, Abe and I were driving south along I-91 in Vermont, that there is no way I could have done that two years ago: I could never have taken two kids from northwestern Connecticut to Vermont for two days, and back, by myself. I could never have left at dusk with a 3 hour drive ahead with conflicting navigational instructions, by myself. I certainly could never have followed those curvy Connecticut roads, names changing every 2 miles or so, in the dark, by myself.

Two years ago I was suffering from debilitating anxiety, provoked by the stresses of having a child with PWS, a demanding toddler, and some unexplained but persistent dizziness. No task was small. A trip to the pool was overwhelming, as was making dinner, or even a night out with friends.

So last night, as the sun was setting and a gentle summer rain just starting, I noticed that I felt hopeful and strong, not anxious, as I set out from my friends' verdant and peaceful Vermont home, towards Connecticut where I'd left Oscar with my inlaws just the day before. It was an easy trip and we were treated to a near-full rainbow and views of rolling hills and leafy trees painted in the deepest summer greens. We sang along to the Weepies and the Indigo Girls and the kids each took a nap. I joked with Abe that 18 years ago when I used to make this trip routinely to visit Paul in graduate school I didn't have mapquest directions, let alone a GPS or an iPhone. And yet, last night, I was using all three to help me navigate the last hour of dark and twisty backroads. I chose my route after consulting all three sources because it was fun and staved off fatigue.

It was a bit of an experiment for me to stay east while Paul returned to Berkeley for work. (Again, no way I would have volunteered to make the cross country flight solo with three kids, 2 years ago). The experiment is going well. Abe and Ruby loved our side trip north and it was very satisfying to me to share Dartmouth with them. The campus is so different from anything Abe has seen before -- so small, so contained, and so beautiful. We played frisbee on the green -- that large rectangle of grass crisscrossed by gravel paths in the center of campus where Paul and I played many an afternoon during our sophomore summer. We visited my dorm, and then Paul's and bought t-shirts at the co-op.

At my friends B and D's house, Abe and Ruby got to experience rural life. B and D have created a wonderful retreat-like home on 26 acres of Vermont land -- a spacious, airy, and light-filled house perched above their outdoor ice rink and, farther down the hill, their pond. My two kids romped and wrestled on the grassy lawn with their three girls with no worries of cars or other urban menaces. They raced off to the garden to pick bright orange carrots and sweet blueberries. We donned swimsuits and made the short trek down to the pond with its soft sandy shore. Ruby delighted in the newts and frogs they caught while Abe kept up a never-ending game of chase with an ever-changing fraction of the remaining girls.

This side trip is just a small segment of our vacation, sandwiched between time at the Jersey shore with my family and time at the lake in Connecticut with Paul's. And yet it stands out to me because the last time I was back east in the summer I was just starting to recover from those six disorienting and often disabling months of dizziness and anxiety. Last time I was here I was still fragile, and cautious. B once noted that I use the places I've lived to keep track of my life. Having moved so much as a child, place became a natural way to remember the small as well as significant events in my life. Now, living in one location as I have for so many years (14 years in Berkeley, 8 years in this house), it is harder to keep track of what happened when. Being east in the summer again has triggered this memory of anxious times and I remembered last night, that two years ago, when I was last here, I would not have been driving down I-91 with two kids in the dark and rain, alone.

And, even if I had, I would not have been singing loudly and enjoying the beauty of my surroundings and my children like I was last night.

5 Hours

I had 5 hours to myself today. It was rather remarkable, all that time, with no one whining or perseverating or questioning my every move. I was tempted to feel guilty but I shoved those thoughts aside and tried to just enjoy. Of course, I had many errands to do -- photocopies, drop-offs, returns, shopping, etc, in preparation for our trip East, but I got to do it all alone.

We're leaving Friday for a week in Sea Isle City NJ, where my brother and I will amicably argue over the air conditioning (I'm a windows open, ocean breezes gal, he's a full blast fake air guy), but my lovely sister in law is letting us have the better bedroom so I'm going to try to suck it up this year. We'll eat lots of shellfish, but I won't try clamming -- the bay swallowed my left Keen 3 years ago and Paul peed his pants laughing at me and my muck-covered legs. We'll spend long days at the beach playing in the waves, building sand castles, and sitting under umbrellas with books. I already feel the pull of the sea and it's salty crashing waves.

After Sea Isle, we'll head to CT to spend time with Paul's family on Woodridge Lake. The cool(er) mornings are perfect for long walks and thanks to excellent planning on the part of Paul's sister, I will have some time to myself, to exercise, read, and perhaps even write while Ruby and her beloved big cousin keep two babysitters on their toes with their antics. Paul will only spend the weekend with us before returning to CA for work. I'll stay on with the kids, and take a little trip up to NH to visit my dear college friend and her family. I'm excited for Ruby to romp with B's three girls, one exactly her age. And I'm especially excited to introduce Abe to my alma mater. I'm not sure why -- I don't want him to go there...I just want to share it with him..show him where Paul and I met, where we went to college.

There's lots of packing to do, and I don't seem to be able to just toss a bunch of shirts and shorts/skorts into a bag and be done with it. I have to try it all on and see if it still fits. This past year of little exercise and too much good food hasn't helped. And I don't wear these warm weather clothes so often in Berkeley so I practically have to dust them off. But I will push forward and get the bulk done tonight as tomorrow I'm going to be raising a glass of champagne with my wonderful friend W to celebrate her birthday and her new house and then racing off to hear Vicki Forman read from her newly released memoir This Lovely Life. I can't wait! And now that I think about it, that means I'll have another 5 or so hours sans enfants tomorrow too!

Enough?

Oscar and I raided the "zoo" section of the library today. I admit I was annoyed when he said he wanted to check out zoo books. He says that every time we go to the library. I snapped at him and reminded him that he's already read all of the zoo books a zillion times. He would not budge, so I caved, and searched "zoo" on the library computer. You'd think I'd have the call number memorized by now.

I'm not sure if we discovered a new stash or what, but we'd only seen two of these books before. There were some great "new" ones sitting on the shelf, including one called "Dear Bronx Zoo" featuring answers to kids' most asked questions about the Bronx Zoo. Perfect for Oscar, or what?

So, as he stood there with arms outstretched, I piled them on. Eight, ten, I'm not sure...a LOT of books, until he said the most remarkable thing.

"Enough Mom! I think that's enough!"


Since when has Oscar ever had enough of anything, especially anything to do with animals or zoos?!!

Time

Oscar is an early riser, by my standards anyway. It's all part of the disability package. For years we've been trying to teach him to stay in bed till 7am. But still we find evidence of stealthy early awakenings -- books or toys scattered on the floor of the cramped closet or a light on in an odd place. Sometimes we hear him, or worse, Abe yelling at him to be quiet, as early as 5am.

Now that he is starting to learn how to tell time, things are getting a little better. But it's summer, and 7am is too early for me when I am not nodding off till past 1am. Last week, Oscar begged me to put a clock in his room so he didn't have to get out of bed to look at the clock in the kitchen. I obliged, but I tried to trick him by setting it back a 1/2 hour, thinking I could catch some extra sleep.

I should have known better. Tonight as I putting Oscar to bed he told me that he didn't like that clock I'd placed on his bedside shelf. When I asked why he said that that clock was "slow". Although he was right, I was surprised he used such accurate words to describe the clock -- his accuracy didn't fit with his tenuous understanding of the concept of time. Curious, I asked what he meant by "slow".

"Well, when this one says 6:20 the kitchen one says ten minutes to 7." He's right. And I'm impressed.

And then he says, "Yeah, it's slow, Mom. It just takes too long get to 7:00 so I only use it when I want to sleep in. I use the kitchen clock when I'm ready to wake up."

So much for trying to throw this kid off. Still, it's clear he doesn't really "get" time, and my shenanigans certainly haven't helped. Just goes to show how desperate I am for sleep! Maybe I should go to bed earlier...

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.