The Walk

A few Saturdays ago we held our 11th Annual Walking for PWS event in Northern California.  Oscar was only 18 months old when we held that first walk and I remember how Paul carried him on his shoulders for most of the two mile loop around the Berkeley Marina. (I remember thinking it was good trunk work for Oscar to hold himself upright like that -oh how we start to think like therapists when all we do is take our kids to therapy.)

In the years that followed Oscar was eventually able to walk the entire 1.75 mile loop, and then, later ride his bike.  The Walk became a way to keep track of those hard-fought milestones and we celebrated with our PWS community, as well as our friends and family that joined us, that Oscar was able to do just a little more each year.

This year though marked a different milestone.  Oscar's class is graduating from 5th grade next week and moving on to different middle schools.  So, at the urging of Oscar's teacher and the director of our school, I invited all of Oscar's classmates and their families to join us for The Walk.  I hesitated to extend a group invitation like that because, as I keep saying, these teachers, families and their children, our dear friends now, have been "walking with us" for years already -- including and accommodating Oscar, keeping him safe, urging him to join games, listening patiently through mind-boggling stuttering, inviting him to watch a basketball game or go to the movies.  They admonish me for thanking them.  They just don't see it that way.

Nearly 50 people walked for Oscar this year at our new location - Crissy Field in San Francisco. Over half the class was there with their families, along with two families from Ruby's class, three teachers and the school's director.  We made t-shirts with the 5th grade class picture on the back for all to wear.  It was almost too much -- that sea of people wearing "Walking for Oscar" shirts on that clear blue sky day in the shadow of the Golden Gate Bridge. All those people there, for Oscar, for us! I felt my body tighten, not wanting to sink into the moment lest I melt into a puddle of tears. 

Our group was asked to lead off the walk.  I wish I could post the picture of Oscar with his friends and Ruby with hers pausing under the green and white balloon arch that marks the start of the walk but I didn't ask everyone's permission.  I wish I could post the picture of Oscar heading off down the path sandwiched between two pals.  It would show his proud shoulders (but not the slight bounce in his step as he walked off.)

I wish I could share the picture of Ruby and the two boys from her class as they wandered slightly ahead, chatting amicably, looking older than their 7 years.  When Ruby heard that Oscar was inviting his class to come and support him, she wanted to ask the 1st graders to come and support her too.  I sent an email explaining PWS to her class, realizing as I did so that I hadn't really ever taken a moment to formally educate all of those families about PWS and what that means for Ruby as a sibling.  I've been feeding them tidbits for two years now, not wanting to burden them either I guess.  I was so glad Ruby was open to sharing, and mostly that she asked for support too.

I wish too that I could post pictures of the elaborate face painting, our group with the Golden Gate Bridge in the background, the kids playing chase on the banks of the amphitheater, the teachers chatting and remarking on the day.  I'll hold this day always in my bank of memories from these amazing six years.

Here, though, are a few pictures I think I can post:

Exsanguination

Exsanguination -- why, you are wondering, is this word spinning around in my head?  Exsanguination is the bonus word that Oscar correctly spelled on today's spelling test. Really.

I stopped by school this morning to drop off Ruby's car seat and ran into Oscar's teacher. Her huge smile forecasted good news -- I'm not sure what I was expecting but it wasn't this.  My brow furrowed in disbelief as several thoughts raced through my mind.

He must have seen the word before.

Nope. 

Someone must have told him. 

Nope.

Did he cheat? 

No way. (I feel horrible that this even crossed my mind)

I looked over at Oscar's aide who nodded, smiling, confirming.  By now the director of the school had joined the conversation and the marveling.  She, like all of Oscar's teachers, has been celebrating his successes with us since kindergarten.  (In second grade, when Oscar was reading his poems aloud at the class publishing party, the poems he had written himself, her eyes were wetter than mine.) 

As we discussed what exsanguination actually meant, Oscar bounced over and said, "let me see if I can do it again."

Without hesitating he rattled off the letters -- E-X-S-A-N-G-U-I-N-A-T-I-O-N.

I must have still looked surprised because when he finished he said confidently, "It's easy Mom. You just go syllable by syllable."

Syllable by syllable. Little by little. Step by step. He's so right. It's how he has gotten here.  It's how he learned to walk. It's how he learned to read, and ride a bike, and draw a giraffe. It's how he'll always move forward.  It's how he'll always accomplish his next goal.

I used to be so impatient, anxious even, waiting for Oscar to reach the next milestone.  When he was an infant I compared him to my memories of a precocious Abraham who took his first steps at 8 months. When he was a toddler, I'd pull out the developmental tests and check his progress against skills for his age group.  I'd argue to the early intervention therapist that he could stack those 1" cubes if he had better trunk strength and fine motor control and therefore he shouldn't be penalized on his cognitive scores.  I'd talk incessantly with other parents about what their child could or could not do.  I'd lie awake at night thinking about ways to help him along.

At some point though I stopped charting and calculating and wondering and worrying.  I still supported him. I still taught people how to break down tasks into smaller chunks so he wouldn't get overwhelmed and could feel a sense of accomplishment each step of the way.  I still took him to all his therapies and advocated fiercely for his placement at this amazing school.

But mostly I relaxed into the knowledge that he would eventually get to that next place and that it wasn't a race. Mostly I just started believing in Oscar.

It seems corny now but the very first book we read to Oscar when he was a floppy infant in the NICU struggling to stay awake long enough to feed was The Little Engine That Could.  There weren't too many books lying around the NICU but this little dog-eared copy was a staple and we read it no fewer than a dozen times in his two week stay.  We read it to ourselves as much as to him. We read it to glean hope that he'd someday be able to eat, to walk, to talk -- things we didn't count on in those early pre-diagnosis days. Oscar knows this, and sometimes when we express surprise at his latest accomplishment he reminds us that he is the little engine that could.

He reminds us to believe.

Hawaii

We returned from Hawaii exactly a week ago tonight, and yes, it's taken me this long to post! The trip was in honor of Paul's parents' 70th birthdays and so we were there with them, Paul's two sisters and our niece -- and had such a wonderful time.

We stayed in condos overlooking a cove just around the corner from Napili Bay and enjoyed this amazing view from our balcony.  I loved falling asleep listening to the waves knocking against the rocks, and, a whole week later, I still miss the sounds of the water and breezes at all times of the day.

We went to a luau with the men and kids wearing these matching shirts and dresses.  (Notice that I'm hidden in the back in my boring brown dress). We all felt a little silly but it was fun.  Abe enthusiastically responded to the call for volunteers to learn the hula dance up on the stage, Ruby took dozens of pictures of the dancers, and Oscar was wide-eyed and keeping the beat with the drummers all evening long. 

We realized (thanks to facebook) that old college friends were staying just up the road from us and so we enjoyed an hour reminiscing over a glass of wine at sunset on a gorgeous point separating Napili from Kapalua.

We have at least five pictures of Oscar wearing this hat -- is it Paul's or Grandpa's? I'm not sure, but I think it looks best on Oscar.

Oscar wasn't so excited about getting into the ocean (except for snorkeling) but he swam laps in the pool, and then cozied up in towels on the pavement afterward.

We tried surfing, and I thought I'd be really good, but I really really wasn't. Abe did well, and so did Paul's sister and my niece, and Paul too actually. Really, everyone but me seemed to get it.

We snorkeled nearly every day, exploring most of our favorite spots from years past.  We swam with the turtles in the cove, and drank wine on the "grassy knoll" overlooking the cove at sunset.  We boogie boarded (even backwards)...

gazed out at the cove and drew pictures...

...and built sand castles.  Oscar started and finished a castle all by himself one day with no help or suggestions from anyone.  (Sometimes I don't realize how much help, or rather how consistent his need for help is, until he does something completely independently.)

 

Can you see it? He's pretty proud.

And Paul, Abe, and I read most of the Suzanne Collins Gregor the Overlander series. I'd brought lots of books about writing, a memoir or two, and one novel, but I didn't read any of those. Instead I got completely sucked into this five volume series and only finished last night.  I loved diving into a wildly different world, and then discussing plot and character development with Abe.  He says, by the way, that the Hunger Games trilogy is better, so that's what I'll read next.

I found, though, that despite the glorious setting and fun adventures, that I couldn't escape my anxiety in Hawaii. The breathtaking views, warm trade winds, crashing waves and the sugary sand were all incredibly soothing to me during the day but I really struggled at night. I woke in the wee hours and could feel the panic start to fill my head. I practiced my breathing and focused on comforting images but the stomach pains and racing thoughts persisted.  (Our mediation with the school district is on Wednesday and I can only assume that thoughts of that meeting were invading my calm.) 

On our last afternoon, I sat on Napili beach and concentrated on the contented calm that filled me in that moment as I breathed in the swaying palms, shimmering water and billowy clouds.  I promised to start making some changes to help reduce my anxiety and feel more fulfilled no matter how busy and stressful our days are sometimes.  I need a daily practice.  I don't know yet what that looks like, but this photo brings me hope that I can figure that out. 

 

Aloha!

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

One and a half

Two

Two and a half

Three

Four

Four and a half

Five

Six

Seven

Eight

Nine

Nearly...

Almost...

TEN!!!!!!!!

I love you Oscar!

Skiing

We're in the mountains for a few days of skiing.  The blue skies, tall green pines, and soft mounds of white snow blanketing the hillsides fill me with a much needed calm.  Today from the top of the lift I could see Lake Tahoe, sparkling blue and surrounded by snow tipped peaks. Paul can point to each peak and tell me where we have skied and where we have backpacked and where we have hiked, but I am happy to just stand there in silence and appreciate the raw beauty.

We often come to Tahoe with Paul's parents to ski this time of year.  We skipped last year because Abe broke his arm so badly in November '08 that he still wasn't medically cleared for skiing last February. It's been two years since any of us have been on skis. 

Two years ago, at age three, Ruby could barely shuffle her skis along. This year she couldn't wait to get out there. She coaxed Abe into her room right after breakfast yesterday and enlisted his help pulling on her ski socks and long underwear.  She started the morning skiing between Paul's legs and then graduated to wearing a bright red harness around her chest.  Paul held the reigns from behind and she skied out ahead, falling frequently but also learning to shift her weight slightly for turning. She's far from skiing independently but her wide smile, contagious giggles and enthusiasm foretell years of skiing ahead.

Abe now skis the black diamond runs with Paul and Grandpa. He races down steep terrain and through clusters of trees with an aggressiveness that borders on recklessness.  When he got home yesterday he collapsed in a cushy chair by the window and just sat.  He was sated. But tomorrow I know he will be the first one dressed and ready to hit the slopes again.

Oscar started skiing when he was six years old.  Skiing was one of those things I'd crossed off the list for our family.  When Oscar was diagnosed with PWS I felt my world collapse around me leaving only faint paths in a field of craters.  Family ski trips sunk into one of the craters, along with Christmas cookie baking, parties with buffet tables, family backpacking trips, and a million other things I'd taken for granted until then.  As time passes, many craters have filled back in -- things I'd erased have re-emerged as possibilities. Perhaps not exactly as I had imagined them, but often close enough.

Disabled Sports Far West made skiing a possibility for Oscar.  We signed him up three years ago for his first series of lessons, not knowing how it would go.  Besides having rather low trunk tone, low energy, balance and motor planning issues, he's also prone to anxiety, can be rather rigid, and is not exactly fond of being cold.  On the rare occasions we are somewhere with snow he's proven to be a reluctant sledder and not so into snowball fights.

But he loves to ski! Disabled Sports has all sorts of adaptive equipment to accommodate skiers with a wide range of physical and developmental disabilities.  Yesterday a very young girl who cannot stand independently was skiing with a walker type device.  Wheelchair users are accommodated with monoskis, and some skiers have two instructors to help with the equipment and encouragement.  When Oscar first started skiing he had a rigid bar connecting the tips of his skis so they wouldn't cross. He wore a harness held by one instructor and steadied himself with a ski pole held across his trunk by another instructor. I'd mentioned his love for animals, so as they inched down the hill they looked for imaginary lions and giraffes among the trees that line the beginner run adjacent to the adaptive ski school. 

The instructors keep detailed notes of each lesson documenting Oscar's motivators, the equipment he used and their thoughts on his progress.  The notes remain in his folder and are reviewed each morning by that day's instructors. I remember thinking that this could easily turn to babysitting -- Oscar would probably be fine doing the same run with the same equipment, lesson after lesson. But each day the instructors challenge Oscar to progress to the next level with minimal frustration and anxiety.  He's actually learning to ski! At the end of his two and a half hour lesson he is exhausted but always seeks reassurance that he can return the next day.

So many of us raising children with special needs write about how frustrating "the system" is. We fight for appropriate educational accommodations, we spend hours in doctor's offices, we attend dozens of meetings, send zillions of emails, and we are buried under piles of insurance claims and paperwork.  Everything is just harder when you have a kid with special needs and so few people really "get it".

Disabled Sports Far West is exactly the opposite. Sure there is a little paperwork to fill out, but just one page and the questions are relevant.  And they read it.  Yesterday I pointed out to the intake person that I had written on the form that Oscar can only have the food and drink that we bring for his snack at ski school. She smiled kindly and said "no problem, we'd already seen that".  It was clear too that they were aware of his anxiety.  His name wasn't actually on yesterday's skier list, but instead of telling me that in front of Oscar, she discreetly called her supervisor over to the back door and they summoned an additional instructor.  Oscar never picked up on the mistake and it was rectified immediately.

Somehow skiing with Disabled Sports is also cheaper.  Oscar gets a private lesson and a lift ticket for far less than we pay for Abe or Ruby at the regular ski school.  And we can use the disabled parking spots right in front instead of walking for miles through the Alpine Meadows Ski Resort parking lot. 

Yesterday was Oscar's first lesson of the year.  Like Ruby he couldn't wait to ski.  I was a little concerned to see that he had just one instructor and no extra equipment this year.  But Oscar's instructor Linnea used a ski pole or her hand to give him confidence and by the end of the lesson he was skiing very short bits on his own.  She worked on weight shifting for turning, calling his left leg "Lion Lefty", and his right "Rhino Righty", capitalizing on his love for animals.

Today's ski lesson was with Clayton, a twenty-something athletic man. Oscar loves young athletic men.  At school he does secret handshakes with the men who teach PE and afterschool and he works harder with them than he does with anyone else.  They are cool and Oscar wants to be cool too.  He responded to Clayton in the same way and emerged from his lesson turning better and skiing faster.  I found out afterward that  instead of looking for imaginary giraffes they spent their time on the slopes looking for "cuties", which, in Oscar's words, are "tallish, youngish girls".  In order to spot "cuties" Oscar had to turn, so turn he did!  I don't know how Clayton knew Oscar was already a little into girls...it's just part of the magic of this ski school I think.  Clayton also got Oscar to agree to ride a different chairlift and together they tried a harder run.

Even though they call it Disabled Sports, Oscar is just a kid here and I think that is what I love best.  Each skier is treated with such respect and kindness and their needs are completely and safely met.  I realized this morning as I was skiing with Abe and Grandpa that I wasn't even worried about Oscar. I'd dropped him off with virtual strangers and knew he was completely fine.

Family skiing is definitely back on the list. In a few more years I predict that Oscar will be riding the chairlifts with the rest of the family. He might be taking the easier way down but I'll do that with him...I can enjoy the beautiful scenery better that way anyway.

BIG news!

I'm in the middle of about 3 posts. So little time with Paul in Brazil these last two weeks and me holding down the fort (and attending all the back to school events) alone. I'll get to finishing those stories soon, but couldn't let this day pass without announcing the big news:

Oscar learned to ride a bike today!

I was in the middle of an email to a mom of an infant with PWS (trying to remember, ironically, when it was that Oscar could finally hold up his head) when I got the phone call. Paul, who arrived home yesterday, had taken Oscar and Ruby to the park to give me some time to catch up on a few things, and apparently they took bikes. It's something Paul tries with Oscar every six months or so, but as far as I knew he'd never gotten close. His balance reactions were slow, his motor planning a bit off. I'd pretty much given up on it ever happening without some huge intervention. In fact, I've been keeping an eye out for another trail-a-bike so we could do family bike rides again. I figured we'd get a tandem some day. Tandems are cool. I was totally ok with him never riding a 2 wheeler bike.

So the call came as a surprise. I threw on my flip flops, hopped in the car and raced to the park to see for myself. And sure enough, he WAS riding a bike. Look!




I dissolved into a puddle of hysterical laughter and tears. Paul squatted down in front of me and wrapped his arms around me. His eyes welled up too.

So great are the joys. So high are the highs.

Interruption

I'm interrupting my vacation silence because --

It occurred to me last night, as Ruby, Abe and I were driving south along I-91 in Vermont, that there is no way I could have done that two years ago: I could never have taken two kids from northwestern Connecticut to Vermont for two days, and back, by myself. I could never have left at dusk with a 3 hour drive ahead with conflicting navigational instructions, by myself. I certainly could never have followed those curvy Connecticut roads, names changing every 2 miles or so, in the dark, by myself.

Two years ago I was suffering from debilitating anxiety, provoked by the stresses of having a child with PWS, a demanding toddler, and some unexplained but persistent dizziness. No task was small. A trip to the pool was overwhelming, as was making dinner, or even a night out with friends.

So last night, as the sun was setting and a gentle summer rain just starting, I noticed that I felt hopeful and strong, not anxious, as I set out from my friends' verdant and peaceful Vermont home, towards Connecticut where I'd left Oscar with my inlaws just the day before. It was an easy trip and we were treated to a near-full rainbow and views of rolling hills and leafy trees painted in the deepest summer greens. We sang along to the Weepies and the Indigo Girls and the kids each took a nap. I joked with Abe that 18 years ago when I used to make this trip routinely to visit Paul in graduate school I didn't have mapquest directions, let alone a GPS or an iPhone. And yet, last night, I was using all three to help me navigate the last hour of dark and twisty backroads. I chose my route after consulting all three sources because it was fun and staved off fatigue.

It was a bit of an experiment for me to stay east while Paul returned to Berkeley for work. (Again, no way I would have volunteered to make the cross country flight solo with three kids, 2 years ago). The experiment is going well. Abe and Ruby loved our side trip north and it was very satisfying to me to share Dartmouth with them. The campus is so different from anything Abe has seen before -- so small, so contained, and so beautiful. We played frisbee on the green -- that large rectangle of grass crisscrossed by gravel paths in the center of campus where Paul and I played many an afternoon during our sophomore summer. We visited my dorm, and then Paul's and bought t-shirts at the co-op.

At my friends B and D's house, Abe and Ruby got to experience rural life. B and D have created a wonderful retreat-like home on 26 acres of Vermont land -- a spacious, airy, and light-filled house perched above their outdoor ice rink and, farther down the hill, their pond. My two kids romped and wrestled on the grassy lawn with their three girls with no worries of cars or other urban menaces. They raced off to the garden to pick bright orange carrots and sweet blueberries. We donned swimsuits and made the short trek down to the pond with its soft sandy shore. Ruby delighted in the newts and frogs they caught while Abe kept up a never-ending game of chase with an ever-changing fraction of the remaining girls.

This side trip is just a small segment of our vacation, sandwiched between time at the Jersey shore with my family and time at the lake in Connecticut with Paul's. And yet it stands out to me because the last time I was back east in the summer I was just starting to recover from those six disorienting and often disabling months of dizziness and anxiety. Last time I was here I was still fragile, and cautious. B once noted that I use the places I've lived to keep track of my life. Having moved so much as a child, place became a natural way to remember the small as well as significant events in my life. Now, living in one location as I have for so many years (14 years in Berkeley, 8 years in this house), it is harder to keep track of what happened when. Being east in the summer again has triggered this memory of anxious times and I remembered last night, that two years ago, when I was last here, I would not have been driving down I-91 with two kids in the dark and rain, alone.

And, even if I had, I would not have been singing loudly and enjoying the beauty of my surroundings and my children like I was last night.

Bling

I am a Hopeful Parent.
But I cannot get that Hopeful Parent bling onto my blog.
I've cut and pasted and cut and pasted and pasted and pasted.
Nothing nothing nothing happens.
Then, it shows up in the wrong place.
I cut and paste again -- the code and bling both vanish.
I'm getting frustrated
I want that damn blog bling.

But before you come to my rescue, go read today's post 2 Per Bag.
It's a fabulously written and very moving post.
And as long as you are helping me, add that blog bling to your blog too.
Lots of great stuff over there, every day!

I'm still here!

I've been quiet on my blog lately. There is just too much going on.

Some triumphs: The Los Mapaches concert was Saturday in San Francisco. All three kids performed! Abe sang out and actually moved his body to the beat. He played guitar for the first time on several numbers, drum on another. He looked so happy, so confident up there. Oscar's stage overwhelm is gone. He was "on" the whole time, and his face, while singing, emanated a beautiful mix of passion and sincerity. He led one song on stage with the bombo, helping to keep the beat for the rest of the musicians. And Ruby was a ham. She made sure each one of the 300 people in attendance noticed her as she sang, played zampona, and did the motions. What a night!

And some struggles: Oscar's IEP was also this week which is always a source of major stress for me. (Placement has historically been very very hard-fought.) This year was smooth but no one could tell me beforehand that that would be the case so of course I went through all the pre-meeting anxiety and post-meeting decompression. Abe's been having a very hard time at school. We're so sad, but also proud of him for how he has been keeping his chin up and continuing to try. I wish the last weeks of his elementary years could be sweeter but I also know that it is a gift of sorts to be ready for the next adventure. He is. I just wish he could take his 5th grade teacher with him to middle school. Oscar's stuttering is at an all-time high. He can stumble over one syllable ten times before he gets it out, his face contorted with the effort it requires. I love though that he can calmly admit that he is frustrated and I can reassure him that it will pass, because it always does. I feel blessed (and if you know me you know I rarely use that word) that he has the ability to converse so maturely. Finally, Ruby's tantrumming peaked last week to the point where Abe stood by my side and told me in a soothing voice that he had seen what happened. I was crying but I am not sure why. Because I don't always know how to help my 4 year old when she rages, or because my 10 year old can step out of his pre-teen fog and angst to validate my experience?

I am ok, just drained. PWS walk and 5th grade play this weekend on top of all the baseball games and practices that are the respite in our busy life.

Fog of Disbelief

Yesterday I visited Oscar's 2nd grade class and read a "book" I wrote about him and Prader-Willi syndrome. I write a new version each year and always include lots (and never enough) pictures of him having fun with his school friends. His wonderful teachers allotted a whole hour for the book and discussion, which really allowed us to delve deeply into the topic of Oscar, his challenges and how to support him as a friend. Oscar was not there -- we arranged for him to be with the learning specialist so the kids could speak freely.

The kids expressed such care, concern and compassion. Their questions were sweet and thoughtful. In the book I aimed to touch on things that distinguish Oscar from a typical kid. I wanted to validate their every observation and help them understand the challenges PWS presents. I was fully prepared for lots of additional observations -- things his brother points out all the time -- like "he chews with his mouth open", "he talks to himself", "his stuttering is really annoying", "he forgets to flush", "he can't run fast", "why does he get to take breaks and do less work". Nope. None of that.

These kids wanted to talk about whether Oscar was okay with me talking about him without him present. They wanted to know whether he'd like more play dates, and if he'd prefer to play "crazy chimpanzees" or "mad monkeys", games they made up because they knew the name alone would be appealing to him. They talked about ways to include him in games, even when it seemed like he wanted to play alone. His aide, his amazing aide, led this part of the discussion, allowing the kids to present their ideas and validating them, and also stretching their concept of inclusion to mean more than not excluding.

We talked about how Oscar knows he has PWS, but that we always focus on the positive. We don't say "You can't" but instead try to say "You can..." so he feels good about who he is and what he can do. One child chimed in and said, "I get it, you always put him on the bright side".

They did get it, on a very deep, and mature level. I knew, I really did, that this was a wonderful and supportive group of peers.

I knew, and yet I am still in a fog of disbelief.

Words are failing me. I cannot adequately describe how beautiful and incredible the experience was for me. I spent the remainder of the afternoon shaky and on the verge of tears. Tears of utter joy but, also, unsettling sadness. It took me a while to figure out why: It just can't get any better than this. I just can't imagine how it could.

a lovely letter

We are back from St. Louis. I am still processing the visit and am in the middle of a post about the rest of our hospital stay that I'll probably finish long after you all remember we were gone at all. Life just picked right back up the moment we landed at SFO with music performances at school, dinner with friends, a baseball game and practices. It will take me a while to find the space to sort out St. Louis in my head.

Meanwhile, life goes on. Today, while I was busily emailing vitamin and supplement labels to Shriners (so they could see just how much calcium, Vit D and B6 the kids are getting), signing Ruby up for soccer, throwing in loads of laundry, and not hauling the 8 newly arrived boxes of Walking for Prader-Willi Syndrome t-shirts down to the basement ...a letter arrived in the mail.

It's a letter for Oscar, with a return address of Haven House, the family housing for people who have children in St. Louis area hospitals. We stayed there one night before we checked into the hospital. Yes I opened it. I could say that I needed to make sure it was appropriate or that with his lack of manual dexterity he couldn't have opened it anyway. But really I was just curious.

The letter was actually written simply to "O.H." and was from "A.", a 10 year old student at a local elementary school. A. had received Oscar's initials from her teacher and was writing to tell him about herself and to wish him well during his stay in the hospital.

Dear OH
My name is A.
I am 10 1/2 years old.
I Love to sing.
I Love animals.
I Love to pick up trash in the woods and plant trees and flowers.
I Love to ride my bike.
If I could I would come and visit you.
I have one Brother and no sisters.
I have two crabs for pets.
There names are
Shotting Star and Wacher!
Get Well Soon,
A.

Oscar will love this letter. If he were to write a letter to a child in the hospital it would sound a lot like this. We don't have crabs but we do have a tadpole named Elisabeth. He loves animals and singing and gardening.

The sweetness of the gesture and the words caught my attention in the middle of my "get organized" morning and I felt a tear escape. I am still processing. My kids are fine. They are going to be just fine. But they were in the hospital and we do need to watch some things. It is real, and yet it is not so bad. It is gray, like so much of our life. So much typical stuff intertwined with unending medical appointments and tests. I feel like I am always straddling two worlds not truly belonging anywhere.

My first reaction was that this letter should have gone to someone else, to another child or another family who really needed it. And then I realized...it went to the exact right child. He too is still processing his experience...his lifetime of experience.

I downloaded and printed three copies of all of our St. Louis pictures yesterday -- the ones from the hospital and the ones from sightseeing, and raced to the drugstore first thing this morning for little photo books. The kids each took a book to school today and shared their experience with their friends. When I said good-bye to Oscar he was showing his book to 3 classmates who were patiently ignoring his stuttering and listening graciously.

So, I am grateful for this lovely letter, for the caring gesture of a complete stranger. If Oscar isn't up for writing back, I will send a note thanking both her and her teacher for their wonderful thoughtfulness.

Making Lemonade

We're making lemonade here in St. Louis.

We're here to investigate the newly discovered familial hypophosphatasia. (HPP is an exceedingly rare bone disease that causes soft bones and early tooth loss). It's not what we'd choose to do for vacation, or even instead of regular life, but we're making the most of it. It almost feels like a break, but not quite.

The kids are undergoing all kinds of testing -- I don't even know the names of all the tests. I do know they took 7 tubes of blood this morning. (They only got 1.5 from Ruby because she kicked and cried at full volume for over half an hour.) The boys had pulmonary function tests at 9pm last night, all the kids have had a series of x-rays, and we're all doing 24 hour urine catches (even GrandMary and Grandpa). The boys are peeing into jugs, and Mary, Ruby and I are peeing into "hats" decorated with flowers by the imaginative nurses. We take our receptacles with us in conspicuous red bags everywhere we go.

Today we were escorted to see Dr. S., the dentist with the most HPP experience anywhere, in a Shriner's van. His office had big console video games and colorful giant-sized paintings of sports heroes and princesses in every room. Spiderman was hanging from the ceiling and Superman was punching through a wall. Dr. S. called Ruby "princess" and I've never seen her sit so still in the dentist chair. Usually she screams. He told Abe to only worry about brushing the teeth he wants to keep. Abe's gums are in terrible shape and no amount of nagging gets through, but I think he heard Dr. S. (It helps that he is friends with Albert Pujols and that one full wall is devoted to the Cardinals.) I'd almost fly here every three months. He's that good.

The kids' food is all painstakingly prepared by the research kitchen and is weighed before and after they eat. They want to make sure they know exactly how much calcium each is consuming when they analyze their blood and urine specimens. But there are a lot more things they are testing, things that I've never even heard of, despite having pored over all the technical research papers many times.

I don't like not knowing everything, I don't like feeling like the overly persuasive mom, I don't like it when the doctor calls me "Mrs. Hill" and refuses to call me "Mary", even when I ask. She's a wonderful doctor, though. She got Abe to laugh and also earned his respect by knowing before he said it that he wanted to be a baseball player when he grows up. She also predicted, based on the position of his cowlick, that he could be a switch hitter. (She made him promise to give her credit if he makes it to the big leagues on that information.) Ruby flirted and giggled with her, and Oscar was not anxious. I couldn't ask for better. And she did agree to call me "Hey You!", an excellent compromise and a big step up from "Mrs. Hill" in my opinion.

I've asked for tests that they will not do:
I want Oscar's scoliosis x-rays taken both in and out of the brace. Denied.
I want them to try to draw Ruby's blood again. Denied.
I want them to evaluate Oscar for orthotics. Denied.
I want them to x-ray Abe's arm to check if his fracture has completely healed. Denied.
This is a research hospital and we are part of a study. I need to remember that.
I also need to remember that this is all free. Yes, FREE!

But we are getting starting to get some answers. We think Ruby might "only" have the odonto (teeth) form of the disease which will hopefully be very very mild. We think Abraham and possibly Oscar might just be carriers. (So we'll just have to test everyone they date more than once to make sure any potential offspring would only be passed one mutation and not two, which could be lethal).

We learned that Oscar's scoliosis curve is "very small". (What does THAT mean? I can't believe they didn't give me a number yet! I've taken that kid for x-rays every 6 months since he was two and have charted his progress and regressions. I need a number!). But, they are not recommending surgery at this point and apparently that is all I need to know.

The big conference with all of the doctors is tomorrow so we'll hopefully learn more then.

We've also laughed, a lot more than you would expect in a 4-day hospital stay. And the nurses and therapists have been fantastic. Fantastic! They took the kids to the special toy closet after the big blood draw. Abe chose a cardinals hat (he left his at home and really wanted one for the Cardinals game we hope to go to on Thursday or Friday). Ruby chose a doll which she promptly named "Luna" and carried with her all day. And for Oscar they had a set of six plastic animals, the very kinds he collects. The smile was precious but I didn't have the camera at that moment.



And tonight, the evening nurses agreed to watch the kids while Paul, his parents, and I enjoyed a nice dinner out. I could post pictures of us all laughing so hard we had to wipe the tears away with our napkins. We found many things to laugh about and to be grateful for (like getting to sleep in a hospital bed instead of on a fold out chair). We felt like escapees. We were escapees.

The kids are having fun along the way too. Abe is playing guitar and reading a book with Paul. He's also discovered a new Wii game down in RT (recreational therapy). He's not working on his research report but that is okay. Ruby is coloring, and playing, and making friends in RT. Oscar is making friends too, and reading, doing sand art, and painting. They are getting exposed to and befriending kids with all kinds of orthopedic challenges, using all sorts of assistive devices and starting to see beyond the visible disabilities to the children within.

And I'm learning how to not be in charge, at least not all the time.
We are making a lot of lemonade here in St. Louis.

A Wonderful Day

Today is my birthday -- number 41! It comes with less dread and drama than 40, and also more wisdom, for which I am glad.

I was determined to make it a day I would enjoy, which included leaving a day early for our long weekend away at Sea Ranch on the northern California coast. I knew that spending my birthday waiting for Paul to escape work and then driving 3 hours in the car with three children and unpacking was not how I wanted to spend my day.

So I packed up the youngins yesterday and we trekked up here on our own, knowing Paul would join us as soon as he could. We meandered a little along the way, finding a little gem of a lunch spot in Jenner. Picnic tables right on a bay and homemade clam chowder!

I love these pictures of the boys eating their lunch together. It warms me to know they can get along so well. It requires a lot of patience from Abe, but Oscar's innate enthusiasm and curiosity are also just good companions.

Of course there were a few mini-struggles along the way...the biggest being Oscar’s immobilizing stomachache in the grocery store in Gualala. I remembered that the last time he'd had such an attack we landed swiftly in the ER. (Most kids with PWS don't get stomachaches and if they do it can be a sign that something is seriously wrong.) I stayed calm and hoped it was gas. I hoped that a bowl of creamy clam chowder was enough of a departure from his normal diet that it alone was the cause, and that it would pass, literally. Thankfully I was right. I did look up the nearest hospital later just in case.

When we finally did arrive at our house, Abe dove in to fire-making, experimenting with different ways to arrange the logs and our store-bought kindling in an attempt to produce a viable fire.

He was not successful, but also not deterred. When I woke this morning, luxuriously late at 8:30am, he had a fire blazing.

He had also made the pancake batter and was flipping the first batch. He wanted to make me pancakes for my birthday. While Abe was busy with fire and pancakes, Ruby and Oscar had made cards, which they proudly presented to me. So very sweet! The first is Oscar's and then Ruby's.

We ate our whole-wheat banana pancakes on the floor by the fire, listening to the Winton Marsalis CD that I had found in a cabinet. It was raining when we finished breakfast, but that didn't stop us. All 3 kids raced to get their suits on when I suggested we try out the hot tub. We stayed in for a loooong time. It was lovely to be so fun and spontaneous with the kids, and not distracted by paperwork, insurance, emails and appointments. And I think it was all the sweeter knowing that we leave next weekend for our 5 day hypophosphatasia study at Shriner's Hospital St. Louis. (more on that later...)

Paul arrived at 4pm, just in time to get settled and make us a drink while we started on dinner. Abe wanted to make burritos, and had looked up an authentic recipe for mexican rice on the internet before we left Berkeley. Here are his ingredients, all pre-measured and ready to go.

Paul brought me the cards that arrived in the mail (including a beautiful one from my wonderful friend W) and gave me a small gift of chocolate from the new shop on Solano and this perfect card.

It was a wonderful day that I didn't think could get any better. But, as we were finishing our burritos, the rain stopped and there was a hint of clearing to the west. We threw on our jackets and shoes and headed out on a walk. We wanted to check on the baby seals we'd seen on the beach the day before.

Below is a picture of our rental house from the path. (It's the closest one). Sea Ranch is a private community stretched along 10 miles of coastline just south of the Mendocino County line. There are miles of private trails and a few public paths and many beaches. We've never been here before so we are enthusiastic explorers.

Ruby ran most of the way down the trail toward the shore, excited to be outside after a long day of rain. We stopped at Shell Beach, where the jagged rocks, the waves, and the briny ocean breezes made me feel like I was home at last.

Ruby was excited about the many-shaped rocks she found.

To the north just slightly we saw a hint of pink in the clouds, and headed off to the bluff where we had spotted the seals the day before, hoping for a sunset. The kids took turns taking pictures on my iPhone and we alternated between long glances to the northwest where we indeed were gifted a beautiful sunset and below us to the south where mama seals and their pups nursed and cuddled. These were moments to cherish and we lingered as long as we could.

We raced back home along the path as the light faded. As promised, we hopped into the hot tub for a quick pre-bedtime soak. I placed votives all along our deck railing and we watched the last hints of pink fade to gray. The steam from the hot tub mixed with the low light of the candles and created a mystical atmosphere. It was just that kind of day. I felt lucky, I felt loved. I am grateful that we could escape like this, to catch our breath for a few days, before real life and all the accompanying responsibilities resume.