Sunday, November 15, 2009

Birthday Eve

Oscar's birthday is tomorrow -- November 16th.  He'll be nine.

I remember clearly the night before he was born. I wasn't in labor, but we were headed to the hospital anyway because I was going to be induced in the morning for reasons which aren't so clear anymore but seemed to be more about convenience than concern.

I remember sitting at our computer, awkwardly stationed in the entryway of our two bedroom bungalow, impatiently waiting for Paul to get home from work so we could leave for the hospital. The day, like today, was somewhat warm but grew dark so early as it does this time of year.  I kept turning around in my swivel chair to check if the approaching headlights were Paul pulling up in our '95 green escort wagon.  He finally called to say he had gotten distracted researching baby names (at work!) but he was on his way.

Paul's parents had flown in from NJ a few days earlier to stay with Abraham and even though they were incredibly familiar with our routines I'd written them thorough instructions about Abe's favorite foods, books and parks.  I listed rainy day activities and kid-friendly restaurants. I'd given them the phone numbers of all of our friends, directions to his music class, and probably songs to sing at bed time.  From the length and detail of the list you'd think I knew what was about to happen.

You'd think I knew they would need every last shred of that information.

You'd think I knew that I was going to spend the next night sobbing and clinging to Paul in the narrow hospital bed in the same exact room we'd elatedly shared with our newborn Abraham two years earlier.  In the exact same room, but this time the baby was hooked up to monitors in the NICU a couple of floors up.

You'd think I knew I was going to spend almost every waking hour of the next two weeks in that NICU questioning every pediatric specialist and trying to nurse an inexplicably and profoundly floppy baby.

I didn't. I didn't know anything.

As far as I knew we were going to the hospital to have a healthy baby. He was going to be just like Abe.  Strong. Smart. Perfect. Normal.  (Ahh those words!)

I think of this evening, and about what I knew and didn't know, every time I look at this picture which was hastily snapped as we hugged Abraham goodbye and rushed off to the hospital. I call it the "before" picture. 

Before Oscar. Before PWS. 

Years ago this picture would cause my grief to rise with the speed and destruction of a tsunami.  I'd fantasize about going back to this moment, about being innocent again, about not being burdened by disability.  I don't feel sad anymore when I look at this picture.  But I also don't recognize myself -- I look so young, so naive, that it's almost like I am looking at a different person.

Thursday, November 12, 2009


Whenever I'm quiet here it almost always means I'm overwhelmed. I'm lacking time for reflection and writing and instead I'm speeding through the days in a fog.  Last night, after I'd given Oscar his growth hormone injection and brushed my teeth, I started to put my contact lenses back in.  This morning, when I dashed home between appointments to drop off a half-baked pizza for dinner I took it straight to the bathroom utterly convinced it belonged atop the white wicker hamper.  With the pizza finally stored in the fridge I hopped back in the car and drove across town, right past my destination.  That was the third time this week I'd lost track of where I was going and had to do a u-turn.

Overwhelm is:
  • A husband in Brazil and three kids in Berkeley
  • Posting an ad for a new aide and receiving 80 responses, conducting phone screenings from the car, and squeezing interviews in around 19 other commitments.
  • Watching my nearly 9 year old stutter so badly his whole face contorts as he wrestles with each word
  • Not having a plan for the 9 year old's birthday in 4 days.
  • Reading about PWS deaths and H1N1 and deciding, still begrudgingly, to get the vaccine
  • Scheduling that vaccine and three other MD appointments in one week.
  • Wondering why the 11 year old has been so quiet and lethargic for three days.
  • Writing a two page letter to my 5 year old's pediatrician about her obsession with food because I can't possibly explain all of the nuances of the situation with her present at tomorrow's checkup.
  • Wanting to edit my workshop piece for the class anthology but knowing I'm not going to have time.
  • Wondering why my hair is falling out, I've gained 10 pounds, and I'm dizzy again.
  • Other things I can't write in a blog for fear of upsetting certain individuals.
  • Wanting to just forget it all and crawl into bed with a good book.

Heck. I think I will do that. 

Check back tomorrow for an update.  Will I use sunscreen to brush my teeth? Put the milk in the cupboard? Confuse the school start time and deliver the kid 15 minutes late?  Or will I add a new blooper to the list?  I bet you can't wait to find out!