PWS Awareness Day 20: Grief, still?

Abe interviewed me yesterday for a class project.  He needed to talk to someone who had survived a challenging time.  He'd been trying to track down a local Holocaust survivor who speaks at area schools, but he'd been unable to reach her.

Raising a child with a disability.  Surviving the Holocaust.  Not in the same category.

"I don't think I'm what your teacher is looking for," I said, my eyebrows scrunched.

"It's fine. It's fine," he insisted.  I felt like he was taking the easy route, but I let him do it anyway.

He followed me around the kitchen with his voice recorder while I brushed the dirt off the mushrooms. While I washed and sliced the kale.  While I shucked the corn, then simmered the soup.  Oscar was sleeping and Ruby was playing wiffle ball at the park.  We had privacy.

"Tell me about Oscar's birth," he asked, his voice soft.

"What were those first few weeks were like?"

"How did you cope?"

I talk about Oscar, PWS, and our family all the time.  I tell our story whenever anyone asks, and, these days, I can do it in that half-smiling, shoulder-shrugging, "life is crazy but we're totally ok" kind of way.  Sometimes, I even throw in a joke. 

And I've written about the scary first moments.  A lot.  This weekend, at the writer's workshop, I shared excerpts of the beginning of my memoir.  Some of the writers in my group told me that they cried when they read it. But I didn't cry when I wrote it, and I started to wonder if I am too distanced now to write it. 

But yesterday, when Abe started asking questions, I felt my body tense up.  I bit my lip and bobbed my head from side to side till I could get the words out.  I swallowed.  But it was useless. I couldn't hold back the tears.

"I don't know why I'm crying," I said to Abe. "You know most of this stuff. We've talked about it."

He smiled and waited. He wasn't uncomfortable.

I thought I'd gotten through all the tears. Years of therapy and support groups and crying to friends and family -- I did a lot of processing those first few years.

Maybe it was because now it was Abe asking the questions.  Abe who was only two when Oscar was born, and, oblivious to our grief, made us all dance in the living room every evening when we returned from the hospital to Neil Diamond's It's A Beautiful Noise, because the song mentioned a train.

Or maybe it was the recognition that my confident, skilled and compassionate older son is undeniably, and beautifully, shaped by an experience I fiercely wished I could have protected him from.

Either way, apparently there is still a little bit of grief buried deep inside.

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.

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!

The Beginning of a Long Conversation (Hopeful Parents)

I'm over at Hopeful Parents today (!!) trying to answer some questions Oscar has about disability.

Come check it out, and stay and read other entries too. 

Sadness

I've been consumed with sadness and grief these past two weeks -- my thoughts revolve around my bereaved friend and her family.  Her husband was a kind man with a generous heart.  When Oscar was first born and I was steeped in the shame and grief of having a child with a disability, he did not shy away.  Instead, he gravitated toward Oscar.  He would gather my floppy and unresponsive infant from my arms and hold him,  calling him "Sweet Oscar". For nearly two weeks now I've been hearing his voice softly calling "Sweet Oscar! Sweet Oscar!"  I hope I thanked him. I hope he knew how important that was to me.  I hope he knew that gestures like his opened my heart to love and the possibility of a happy life, even with PWS.  I hope he knew.

I spent the weekend in their new hometown, amongst throngs of friends and family that gathered for his memorial service. We supported our friend the best we could, but then we had to board our plane for home.  Leaving there was one of the hardest things I've done, ever, and I found myself doubled over on the sidewalk outside her house sobbing "I can't do this. I can't leave her.  I -- can't -- leave -- her!!"  I just wanted to crawl into her bed, wrap my arms around her, and shield her from the frightful, searing pain.  Patient friends and her wise mother helped me see that we had to leave. She needed rest and quiet days with her family.  This will be a long journey and leaving her then was not abandoning her forever. We will go back, we will listen, and we will remember.  I think that is all we can do. 

Tragedy

My dear friend's husband died on Thursday. He died unexpectedly and tragically.  I am grieving so deeply for her and her children and struggling with being so many miles away when I know she is in her darkest hours.

Today as I spoke with mutual friends here and one friend in her "new" hometown there, a million thoughts circled around but one image kept pushing its way back into my mind:

It's my friend in a wedding dress, surrounded by us, her deep pool of friends.  She's walking somberly with us trailing behind, like bridesmaids. But instead of her train we are each carrying a heavy boulder.

If only it were so easy. If only I could step in line and carry some of this weight for her. I'd lug a huge boulder around all day, every day, if it would somehow ease her burden even just a little.

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.

Onion Rings

I've been feeling a little bit guilty about my last post. There is so much raw, screaming, wood-splintering grief in the world that I don't feel I have much right to complain. Plus, this was supposed to be a blog about "finding joy". There was little joy in that post.

I think I'm turning a corner though...as my friend Beth commented, I'm rising back above the water. I took the kids to the local (grass-fed) hamburger joint last night. I ordered Oscar and Ruby the usual -- one kids' menu hamburger to split, orange slices instead of fries, and salad on the side. This time I reminded the waitress to give them the lettuce and tomato with their burger. (For some reason they leave it off for kids - argh.) Oscar eats the orange slices first. He works on them for quite a while making sure not to miss a speck of the sweet fruit. Even Ruby says "ewww, Oscar, don't eat the white stuff". He moves on to his half of the burger, eating it plain. He doesn't want the lettuce and tomato on his bun, but he does want it. I end up cutting that up and mixing it into his salad, which he eats next. Slowly. All that chewing isn't easy in a low-toned low-saliva mouth.

Then he starts on the slice of red onion. (Wait -- I didn't ask for onion!) At this point I realize that I must be starting to feel better, or maybe it is the guilt overpowering the grief, because I catch myself thinking, "So what if my 8 year old is eating a red onion ring by ring? He is here. He talks to me. He makes jokes. He is alive!"

This is what I know: A Berkeley family is in terrible pain right now over the tragic death of their kindergartner in a traffic accident. I passed the site of the accident today -- teddy bears, signs, and flowers adorn the corner where he was struck down on the way to his after school program. I can't imagine. I ended up telling the kids a boy was injured because I want them to know I am serious about streets. Ruby gets it and is not balking about holding my hand anymore. Oscar is slower but I keep a hand on him. Abe is not only looking left, right, left, but back over his shoulder to check for cars making right turns.

And that is not all: Another woman in our community lost her husband when he was hit by a muni train in San Francisco just moments after telling her he was on his way home. I'm reading posts at www.hopefulparents.org about families grieving the loss of their children and facing all sorts of challenges I never dreamed of. And more people are newly diagnosed with cancer, recovering from serious surgeries, babies are being born with disabilities or not being born at all. Not all grief is the same, but I remember clearly the horrible feeling when your world falls away and you are lost, so utterly lost, with no ground left to walk on. I have been there and that is not what I am feeling right now. My grief is old and familiar, and I can deal.

So, back at the restaurant, the rest of us are ready to go and still waiting for Oscar. Ruby and Abe get up to say hello to a friend who is also dining out tonight. I stay at the table, w-a-i-t-i-n-g for Oscar who is carefully separating the 3rd ring of the onion and preparing to eat it, one painfully small bite at a time. He obviously hates the taste of it but he is compelled to finish it anyway. That's Prader-Willi syndrome for you! I don't know why, but I just laugh. "Oscar, you're not REALLY going to eat that whole onion, are you?" He looks up, he laughs too, and puts the 3rd ring down. "No", he says, smiling.

There is hope after all, and I am grateful.

Inspecting the Pieces

It hit me today that I am going through another cycle of grief. I don't know what triggered it, or when it started. It's subtle at first - I pull inward. I talk less to the other parents at pick-up. I reach out less to my friends. It feels like work to smile. I have a shorter fuse. Finally it occurred to me that I'm grieving PWS again, and this time it's the food.

People with PWS are never full and their thoughts are often centered on food. They can't eat as many calories as a typical person either, and are at serious risk of dying if they get too much food. When we first heard about PWS I thought it was a joke. I kept asking who made up this horrible disorder. Always hungry? Eating from garbage cans? Locked refrigerators? Come ON.

It doesn't start overnight. Or at least not for Oscar. It's been a gradual process. We put lots of measures in place early to keep Oscar safe and give him the best chance of success. We eat healthily. We follow a routine and stick to it. We do everything we can and it won't be enough.

Lately, Oscar can't play while I am making dinner because he is so distracted by the food and the thoughts of what he will get on his plate. He sits on the couch in the next room and pretends not to be watching me slice carrots, but he is. He doesn't hear me ask him to wash his hands for dinner because he is looking into the pots. At the table he uses his finger to get every last morsel and hides his hand when I glance in his direction. He drinks his salad dressing. I have to figure out food for every situation. I dread Valentine's Day and Halloween, and parties. I am always watching, planning, smoothing, explaining.

And Abe! Abe waits till Oscar is napping to have his snack. He knows how to use the magnetic locks we have on our cabinets. He helps me cook only when Oscar is sleeping, and he points to his choice on restaurant menus rather than stating aloud what he wants. He chooses salad over fries some of the time.

I did laugh today, which is a good sign. As I was driving through the rain to pick Ruby up from school I remembered when Paul and I started grief therapy. Oscar was about 6 weeks old and I had finally realized that the doctors couldn't make PWS or its symptoms go away. I thought, though, that with a session or two of therapy, we'd be over the grief and the pain, and able to move forward in our new life with Oscar. I find that so funny now. I was so naive! The therapy was extraordinarily helpful, but the work is hard and the grief doesn't ever go away. You acknowledge it, you find space for it, and eventually you learn to live alongside it. Sometimes you are even proud of it because of what you have learned about yourself along the way.

But occasionally you need to take it out and pull it apart and inspect each little piece again. I think that's where I am now. I'm looking at the pieces of my Prader-Willi grief, paying extra attention to the food aspect. I hope that I can wrap it up soon and put it all back in that space I carved out long ago. I'm tired of grieving. It gets old.