Ready!

I'm really really ready for our trip to Hawaii tomorrow.  We're not packed, but we're close. The couch and the chairs in the living room are covered with neatly folded clothes sorted by kid. One chair holds the long pants and sweatshirts they'll wear on the plane but everything else is shorts and bathing suits and water shoes.  I've chosen small games for the condo, pulled out some markers and paper and books for the plane and even remembered to dig the life vests out of the depths of our garage.

The last time we went to Hawaii Ruby was only two years old and still in diapers. Her hair was really blond then and the freckles that dot her face now had yet to appear.  She spent a good part of the trip obsessed with the song B-I-N-G-O and sang it over and over B-I-ENGINE-O, B-I-ENGINE-O. She cracked up when we showed her a video of her two year old self singing those modified lyrics.

Four years later she still sings as she plays. Just yesterday, while Oscar was in his after-school music class, she and her friend made a cube shaped drum out of large colorful plastic puzzle pieces and beat it with shovels while parading around the school yard singing in Spanish. They sang for an hour, sometimes joined by others, and it made me so happy to see her so engaged and comfortable at school.

Oscar was in Kindergarten four years ago, and the exact age Ruby is now.  I remember that it took days to convince him to try modified snorkeling. I knew he'd love watching the brightly colored fish swim around him but he was resistant. He was scared. When we finally got him out into the bay with a boogie board for support wearing just the mask and not the snorkel he couldn't stop giggling.  He was still anxious, working at the brink of his ability, but loving the experience too. I pulled up this picture last night to show Ruby, very well aware that knowing that Oscar snorkelled when he was only six would ignite her competitive spirit.

This time Oscar can't wait to swim with the giant sea turtles that reside in the bay outside the condo. He's talking about it perseveratively and I had to remind him on the way to school that his classmate who was smooshed next to him in the backseat of our little Prius for the third day straight listening to Oscar's stories about Hawaii might start to think he is bragging.  I switched the subject to today's school-wide book swap and thankfully Oscar transitioned.

This picture also helped Oscar get mentally prepared for snorkeling again.  I can sense a little anxiety creeping up (will the turtles bite my toes?) but having proof that he's done it before, as a teeny little kindergartner, is so helpful to him.

And Abe was only a third grader, just eight years old, when we made this trip four years ago.  He seemed so old then, as he does now, and it makes me wonder if I am inadvertently pushing him too hard to grow up.  (We've been arguing these past two days over responsibilities -- me pushing for more organization and accountability with schoolwork, but is that too much to ask at age 12?  I don't know.)  At eight he snorkeled from a boat out in deep waters, skim boarded on the shore, played paddle ball and shuffle board and catch hour after hour.  He plans to do the same this time, and we've made a pact to try surfing.  We need that time together, hopefully laughing as we fall off our boards, as these past weeks have been full of stress and arguments.

Obviously returning to the same area as before is allowing me to reflect on what has changed in the past four years, and what is the same. I also can't stop remembering that four years ago in Hawaii was the beginning of the six months of dizziness that eventually caused me such debilitating anxiety that I called my primary care doctor one night and asked her to prescribe something, anything, to make it stop. Instead of driving the two miles to the pharmacy to pick up the prescription I walked. I walked and walked those six months, trying to calm my body while the dizziness just increased. Evenutally a brilliant neurologist prescribed vestibular exercises that zapped the dizziness in a mere two weeks. I still consider that one of the miracles of the last decade.

I've chuckled too as I've pulled out summer clothes for this trip. The skirt Ruby is wearing below still fits her. It was too long then and a bit too short now.  The orange hoody and blue Keens that Oscar had on fit Ruby now and the bathing suit that Abe is wearing above still fits Oscar. There's comfort in that cycling of clothes. (And Paul is wearing that shirt to work today and probably on the plane again tomorrow. I'm not a fan of Hawaiian shirts but Paul is and you will likely see one in every picture I post.)

There's comfort too in knowing that we will swim with the turtles in the bay. That I'll walk the sandy path from the nearby crescent beach and over to the next one and up past the new condo development to the more secluded oceanside path to the north. There's comfort in going to our favorite taco shop and the farmer's market and hiking down to the blow hole and experiencing the water bursting up like a geyser through the holes bored in the lava shelf from years of tide and wave action.

When I was younger the thought of returning to the same vacation spot probably would have bored me. But so much in our life now is unpredictable and often stressful that I'm looking forward to visiting a favorite spot and relaxing into the familiar soothing routines. We really need this vacation.

So one selfish wish: Obama, I know you are flying out of SFO tomorrow at the exact time that we are. Please please don't close the surrounding roadways so that we can't get to the airport. I don't mind if you have to freeze the air space for a little (little!) while...but at least let us get on our plane. This vacation means too much to us to miss.

Goodbye Sea Ranch.....

Today was a day of transition, away from the raw beauty of the California coastline, and on home to Berkeley. We loved the relaxed pace of Sea Ranch, the long walks on the bluffs and daily checks on the mama and baby seals. Fires in the hearth, puzzles on the floor, naps on the window seat, and evenings in the hot tub. We will be home for just 6 days before embarking on the next adventure, Shriner's Hospital St. Louis.

I treasured the drive south, giggling with delight and nerves at how high above the ocean we were winding along that narrow stretch of route 1. Sparkling blue expanse on one side and sheer cliff on the right. I loved it, pure and simple. Nothing makes me feel more alive than the ocean.

As the road straightened and we veered away from the shore towards the bucolic farms of Sonoma County, my thoughts returned to real life and the week ahead. A busy one, full of appointments, baseball games, practices, rehearsals, and possibly a talk to Oscar's 2nd grade class about PWS (an annual event that I keep postponing, for some reason, this year) I also need to bang out those darn social stories.

And, yes, somewhere in there we need to get ready for St. Louis. We're taking the kids to Shriner's for a 5 day inpatient stay to help answer our questions about their bone disorder hypophosphatasia. They will sleep in hospital beds -- all 3 in one room -- with Paul and me nearby on those bedside chairs. Blood draws, xrays, 24 hour urine catches...a whole battery of testing that will rival Oscar's NICU days.

I've not written too much about HPP here. A large part of me wants to think it is not a big deal and that it is my own obsessive need for answers that is leading us St. Louis. But we do have two positive genetic tests (Ruby and Paul) and the boys have clinical diagnoses. Ruby has lost 3 teeth, her xrays show mild osteopenia, and she is slightly knock-kneed. Abe's feet hurt if he runs too long. His broken arm spent 9 weeks in the cast and still wasn't completely healed. The orthopedist that treated him was an insensitive jerk and didn't believe that he even had HPP. He refused to seek advice from the HPP expert in St. Louis. We are lucky with Oscar. I know he has HPP, but I am thankful we just found out. So many of the early symptoms overlap with Prader-Willi syndrome that we might have missed the PWS had we noticed the hypophosphatasia. We would have missed the opportunity to set up the early food routines that I truly believe have helped him tremendously. And the growth hormone shots he receives nightly for PWS might even be helping the HPP, but they're not approved for HPP. But...we don't know how to treat the HPP given the PWS complications. Do we supplement aggressively with calcium (as recommended for PWS) or avoid it (as recommended for HPP). What about his scoliosis, and the surgery another orthopedist is recommending?

So, yes, it's good we're going St. Louis. We'll get answers, an emergency protocol, and a definitive diagnosis so I will be armed the next time a doctor doubts me like Abe's orthopedist did.

In my heart, I trust the kids will be fine, and that compared to PWS this is nothing. But still my anxiety levels are creeping up. I feel an undeniable lump in my throat, my thoughts are racing, and there is a panic rising as I lay to sleep. I am nauseous and short-tempered.

I am trying to keep the images of that beautiful green and blue sea lapping, and sometimes crashing, against those dark jagged rocks. I am trying to feel the cool spray on my cheeks and the wind sending my hair into impossibly sticky tangles. I am closing my eyes so I can hear the waves and recall the briny scent that inexplicably centers and calms me.

But the anticipation is still getting to me. We've been home for 3 hours and I've already snapped at Abe and placed Paul's computer down on the floor with a bit more oomph than I intended. My patience is waning as the overwhelm seeps in like, ha!, waves on the shore. Maybe that is the answer. Maybe each time I feel the panic rise I can envision it receding. Close my eyes and watch it wash back out to sea. I will try.

Goodbye Sea Ranch. Hello St. Louis.