Friday, December 31, 2010

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!

Wednesday, December 1, 2010

Good Friends

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

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

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

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

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

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

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

And here they are now at age 10.

Still good friends!

Saturday, November 27, 2010

Coming Together Again (Hopeful Parents)

I'm over at Hopeful Parents today, writing more about Oscar's tenth birthday.  Come check it out and leave me a comment here or there!

Friday, November 26, 2010


We spent a lovely Thanksgiving with friends yesterday.  The festivities started with a flag football game that, amazingly, even Oscar and Ruby were coaxed into playing.  Abe was a ringer, of course, and Paul's team saved his skills till late in the game and secured a win.  I didn't add much, but I was out there, holding Ruby's hand and trying to look open for a pass.

Later, warmed by our friends' hospitality and soothing fires we lounged and talked and played cards while the bird roasted.  Oscar managed well the uncertain timing that accompanies roasting a turkey. It is so hard for him not to know exactly when things will happen, especially big things, like the Thanksgiving meal. Well-meaning guests engaged him in lots of talk of hunger and favorite dishes while I tried so hard to distract him from thoughts of food.  I finally had to explain my seemingly odd behavior and they were ever so understanding and curious about his disorder.

Today we started off the holiday season with our traditional 7am viewing of Elf.  The kids excitedly dragged their pillows and comforters out to the family room and Paul and I bundled up on the couch.  Afterwards we queued up our favorite Christmas tunes (Christmas Jug Band!) and started the annoying task of sorting through drawers and shelves for clothes and toys we don't really need any more. By mid-morning the kids were all tired of my nagging so we headed out the door for a walk and a round of haircuts.

Tonight we drove up to the local park's Christmas Fantasy Carousel.  Santa was there too and both Oscar and Ruby eagerly climbed onto his lap though neither really had settled on a toy to request. (Ruby did say she was going to ask for a candy cane -- she's never had one, which I do feel terribly guilty about).  I remembered to ask the elves not to offer them candy and thankfully neither noticed the overflowing basket of sweets at Santa's feet.

Abe, sporting reindeer antlers was too cool to play along.  But he did ride the carousel, after trading Ruby for the Santa hat.

And so we begin the holiday season!  We'll start on outdoor lights tomorrow and perhaps some decorating too. It's early, I know, but we're heading back East before Christmas so we want to have some time to enjoy the season at home as well.

Tuesday, November 16, 2010

A Decade

Oscar is TEN today. 

For the past few years I've occasionally thought about how I would honor the passing of Oscar's first decade. I'm not talking about the standard birthday cake, balloons and presents.  I'm talking about going back and really acknowledging the journey -- the bumps and the triumphs.

I considered writing letters to all the amazing and compassionate people who taught me so much and supported me in those first couple of years as I battled fear, sadness and grief. 

I thought about fundraising for the organizations that led me gently into the world of disability and fortified me for the advocacy and planning and patience required to be Oscar's mom.

I envisioned a huge party at which I publicly and tearfully thanked every person we've encountered on this journey, from our very first home visitor to the boy in O's class who yesterday came up with a new nickname for him, "Oscar the Awesome".

I thought about hiking to the top of Mt. Tamalpais and screaming in celebration that Oscar thrived and that I survived.

Most likely today will be just like any other day. I haven't arranged to do any of these things but I am giving myself permission to make this an entire year of acknowledgment and celebration. 

I feel compelled to mark the end of this decade, I think, because I am keenly aware of how far we've come, and also that our journey continues. Oscar will always have Prader-Willi syndrome and it will always be our job to keep him safe and to help him develop into the happy, confident, earnest person with lots of ideas and goals that he is already clearly becoming.  It's daunting, honestly, and while ten years ago today I was gripped with fear over the prospect of raising a child with a disability, today I am full of hope. 

Oscar, you taught me so much about hope!

3 hours

6 days
3 months

7 months
9 months
One and a half
Two and a half
Four and a half

I love you Oscar!