Saturday, August 29, 2009


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 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.


  1. Oh your post is absolutely beautiful! I wish there were answers to your questions, but I think you found out that Oscar is Oscar and he is able to have a full and wonderful life. He shines because he can and for no other reason needed, I think.

    I can't help but wonder if this is the vacation that will summon up great memories for Oscar that he will talk about for years to come.

    It's amazing what is given to you when you just let go.

    BTW, he is so handsome. I have a cousin and when I saw the last picture of your post, it reminded me so much of Dylan as a young boy.

  2. Thank you for sharing this...I feel I have a much clearer picture of who Oscar is from what you have written. How wonderful, to see that he is growing in freedom and happiness this summer. You are such a thoughtful and loving mother!

  3. What a great portrait, in words, of Oscar. I am not sure we could do the same about any of our children. I think all the dedication to and concern for Oscar in the first chapters of his life has given you the ability to paint a beautifully complete picture of who he is now. It is exciting to think of who he is going to become - your concern and dedication will never go away but now Oscar seems to be saying, "Thanks, Mom (and Dad and Abe) for all you have done for me. Look what I can do NOW! But just wait - I will continue to reach higher and higher. Not everything will be within my grasp but I can grab will be plentiful and rich and rewarding."

  4. Thanks for your kind words everyone!
    Lianna -- I think this is the vacation that will always summon up great memories for me, too. And hopefully I will remember, as you say, that growth (mine and Oscar's) can emerge from letting go from time to time.
    Karen --Thanks for letting me know that the essence of Oscar is starting to come through. I think I need to go back, as you've done with Katie, and write about our journey.
    Dale --I was glad to read you feel it's an accurate portrayal. I hope you are right -- that he will continue to reach and reach. It's not just our family, though, that contributes to Oscar's ability and desire to soar. It's our extended family, community and friends, like your family, that accept and support us and him in ways meaningful beyond words.