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.
Tuesday, October 13, 2009
Sunday, October 11, 2009
Back Again
I've been really grumpy lately, and it's been getting in the way of posting. Kinda sucks that I named my blog "Finding Joy in Simple Things". Doesn't leave much room for complaining.
What has been making me so grumpy? I ask myself that 100 times a day, and I still don't really know. I think it has something to do with having so many things to do and not feeling like I am doing any of them well, or efficiently. If I was more efficient I would have more time for writing. If I was more efficient I would be able to focus on the kids or Paul when I am with them. I wouldn't have piles of papers on my desk, my chair, my dresser. The shower leak would be fixed, and the kitchen wouldn't still be pink and green. My attention would be less divided and I would be more present. My house would be organized, my files in order, the bills paid. Instead I am perpetually distracted, and none of those things are ever achieved.
We are in Tahoe now...the lake ("aqua blue" according to Oscar) is just visible from the cabin we rented this weekend. Tall conifers boasting humongous pine cones surround us, and the air is cleaner, fresher. Yesterday we managed a 5 mile hike with all 3 kids. Quite a feat, made possible only by Paul's willingness to carry Ruby on his shoulders a good part of the time. Oscar was a trouper, and Abe probably could have done the whole thing in half the time, but he was patient and encouraging of his siblings.
And yet, I was still grumpy. I cannot easily step away from my responsibilities even 3 hours from home. Today, during nap time, I spent at least an hour replying to emails from Oscar's therapists about events of the past week. We have a great team again this year, but transitions are always hard. Oscar's new OT is energetic and full of ideas, but Oscar keeps having huge tantrums during his sessions with her. I want her to know it is not her fault. I want to give her some strategies. It was important to write that email.
I also got an email from Oscar's behavior specialist. She is the best in the school district, and I'm still not quite sure how we got her because these days she only does trainings and has only a small handful of children that she follows directly. Oscar is one of those few kids. She's been working with us since Kindergarten. I interviewed her before I even consented to her working on Oscar's case. Even in K I knew that we could waste a lot of time with someone who was not adequately trained. This woman far exceeded my greatest hopes for a behaviorist. She watched the full five hours of PWS videos I gave her before she even met Oscar, and came to the table with a great understanding of the challenges PWS presents. She is about to go on maternity leave and has been observing O in the classroom, talking to his aides and teachers, and making suggestions to tide us over until she returns. Usually I would be there when she walked out of the classroom after an observation to catch the debriefing. Usually we would strategize together. But this time I forgot she was even coming until the day after. Sure we were celebrating Ruby's 5th birthday at school and packing for Tahoe, but I FORGOT.
So I sent these emails off today, Sunday, while in Tahoe, and within an hour had heard back from Oscar's aide, his OT and the behavior specialist. It was really pretty amazing. I know I am lucky, I know Oscar is lucky, to have such a dedicated team. More dedicated than me sometimes. I felt the weight lift just a bit, and I forgave myself for not always being on it. Today I was, and that is good.
The weight lifted a tiny bit more when Paul made us both a cocktail and together with the kids we watched our old photos in a random slideshow on my new computer. It was a miracle to me that the computer didn't crash, as the old one would have. It was a miracle that the kids weren't bickering. We were all together in this beautful spot, enjoying being together. For once, I was "in the moment" enjoying what IS, rather than thinking about what should or would or could be.
So, in the end, I am reporting on the joy in simple things, like an excellent team and good cheese, olives and a derby while watching old pictures, even ones of Oscar as a baby, and feeling happy, connected, and grateful for those near me and also those who work so hard to make Oscar's life so much smoother.
And with that I am hoping to be here more regularly again, grumpy or not. Because you know, even when I am really really grumpy I still like to write. Beware!
What has been making me so grumpy? I ask myself that 100 times a day, and I still don't really know. I think it has something to do with having so many things to do and not feeling like I am doing any of them well, or efficiently. If I was more efficient I would have more time for writing. If I was more efficient I would be able to focus on the kids or Paul when I am with them. I wouldn't have piles of papers on my desk, my chair, my dresser. The shower leak would be fixed, and the kitchen wouldn't still be pink and green. My attention would be less divided and I would be more present. My house would be organized, my files in order, the bills paid. Instead I am perpetually distracted, and none of those things are ever achieved.
We are in Tahoe now...the lake ("aqua blue" according to Oscar) is just visible from the cabin we rented this weekend. Tall conifers boasting humongous pine cones surround us, and the air is cleaner, fresher. Yesterday we managed a 5 mile hike with all 3 kids. Quite a feat, made possible only by Paul's willingness to carry Ruby on his shoulders a good part of the time. Oscar was a trouper, and Abe probably could have done the whole thing in half the time, but he was patient and encouraging of his siblings.
And yet, I was still grumpy. I cannot easily step away from my responsibilities even 3 hours from home. Today, during nap time, I spent at least an hour replying to emails from Oscar's therapists about events of the past week. We have a great team again this year, but transitions are always hard. Oscar's new OT is energetic and full of ideas, but Oscar keeps having huge tantrums during his sessions with her. I want her to know it is not her fault. I want to give her some strategies. It was important to write that email.
I also got an email from Oscar's behavior specialist. She is the best in the school district, and I'm still not quite sure how we got her because these days she only does trainings and has only a small handful of children that she follows directly. Oscar is one of those few kids. She's been working with us since Kindergarten. I interviewed her before I even consented to her working on Oscar's case. Even in K I knew that we could waste a lot of time with someone who was not adequately trained. This woman far exceeded my greatest hopes for a behaviorist. She watched the full five hours of PWS videos I gave her before she even met Oscar, and came to the table with a great understanding of the challenges PWS presents. She is about to go on maternity leave and has been observing O in the classroom, talking to his aides and teachers, and making suggestions to tide us over until she returns. Usually I would be there when she walked out of the classroom after an observation to catch the debriefing. Usually we would strategize together. But this time I forgot she was even coming until the day after. Sure we were celebrating Ruby's 5th birthday at school and packing for Tahoe, but I FORGOT.
So I sent these emails off today, Sunday, while in Tahoe, and within an hour had heard back from Oscar's aide, his OT and the behavior specialist. It was really pretty amazing. I know I am lucky, I know Oscar is lucky, to have such a dedicated team. More dedicated than me sometimes. I felt the weight lift just a bit, and I forgave myself for not always being on it. Today I was, and that is good.
The weight lifted a tiny bit more when Paul made us both a cocktail and together with the kids we watched our old photos in a random slideshow on my new computer. It was a miracle to me that the computer didn't crash, as the old one would have. It was a miracle that the kids weren't bickering. We were all together in this beautful spot, enjoying being together. For once, I was "in the moment" enjoying what IS, rather than thinking about what should or would or could be.
So, in the end, I am reporting on the joy in simple things, like an excellent team and good cheese, olives and a derby while watching old pictures, even ones of Oscar as a baby, and feeling happy, connected, and grateful for those near me and also those who work so hard to make Oscar's life so much smoother.
And with that I am hoping to be here more regularly again, grumpy or not. Because you know, even when I am really really grumpy I still like to write. Beware!
Labels:
Oscar,
PWS,
transitions
Sunday, September 20, 2009
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:
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.
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.
Sunday, September 13, 2009
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!
Labels:
Abe,
birthdays,
middle school,
transitions
Thursday, September 10, 2009
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.
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.
Labels:
family,
transitions
Tuesday, September 1, 2009
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.
Labels:
Abe,
middle school
Saturday, August 29, 2009
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.
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.
Thursday, August 20, 2009
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.
Wednesday, August 5, 2009
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!
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!
Tuesday, August 4, 2009
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?!!
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?!!
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