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!

Friday, November 5, 2010

Conference Eve

Tomorrow is our annual state Prader-Willi conference and this year's speakers are fantastic. Dr Linda Gourash and Dr. Jan Forster are my favorite PWS experts. Their work has formed the basis of our approach to Oscar's food and behavior, and I credit their brilliance for our success so far.  Their work helped us create a food security protocol that keeps Oscar safe at home and at school.  They also helped us realize that telling people that Oscar was always hungry didn't really elicit the desired response. Instead, if we say that "enough is never enough" people won't be tempted to try to placate Oscar with more food...No matter how much you give him he could always eat more. It's a hard concept to grasp, and it applies to more than food.  For years Oscar would try to wear two or more pairs of socks. He would wear layers and layers of pajamas and as many as three shirts to school.  His plastic animal collection is probably worth thousands. (ok, that's an exaggeration).  But we see it across all domains -- enough is never enough.  So simple..but I would have never thought of it myself.

I own four copies of their Food, Behavior, and Beyond DVD. One is on permanent loan to our school district and I brought two more with me to share with local elementary teachers that will be attending tomorrow.  Oscar's two aides are coming, as well as his former preschool teacher and the district behavior specialist.  I just know I'll be sneaking away from my post at the education table to chat with everyone!

I drove down to San Jose tonight to attend the pre-conference "Meet and Greet" and got to talk briefly with both Dr Gourash and Dr Forster. They are so lovely and generous with their time and attention.  I found out in the four plus years since I've seen them present they've revamped their talks to include more up to date material. I thought they were pretty well up to date before so I'm excited to see what tomorrow brings.  I'm hoping it includes another song or two -- they always mix in a couple of duets they've written about PWS into their presentations -- definitely a highlight! I'll be sure to report back here.