Déjà Vu

I really didn’t want to have to start like this. I really meant to write after things had settled down and Ben was feeling fine. Some of you might have been waiting to hear the post-operative good news. It took a little longer this time. He had trouble with the anesthesia in the days following surgery. Vicious headaches and nausea every time he sat up. The 10 hours of travel home from Philly less than 72 hours post-op were not a breeze. But he did come out of it. We did have some great days. And now I’m sorry I didn’t write when I had the chance.

Because yesterday, which was, incidentally Ben’s 15^th birthday, yesterday everything changed and now what I have to tell you is that in a few hours Ben is going in for his twelfth surgery at Shriners Los Angeles. His surgical wound has not healed, is leaking a clear fluid, and is swollen. He and Mark arrived in LA early this morning and headed straight to the hospital where the doctors were expecting them.

 Yesterday morning I felt possessed. I awoke early and after checking emails saw, with some surprise, that our friends and family had already started wishing Ben “Happy Birthday!” on his Facebook page. “What kind of a mother am I who isn’t the first one on the planet realizing it’s her child’s birthday?” I thought. Not that I hadn’t known it was his birthday. We’d already had the celebratory dinner a couple days early (scheduling conflicts!) and we’d been talking about it and his party was happening on Friday night. But, How is it, I asked myself, that I could awaken and not just know it…my first realization, my first thought? I pondered what I was going to do to make his day special.

I didn’t always leave birthday planning to the last minute. I used to shop and think and plan, plan, plan. It’s not my fault really, it’s Mark’s. And since I have recently rhapsodized about Mark’s saintly qualities, I can say this openly. Mark isn’t very good at birthdays or Chanukah or Valentine’s Day. My most incredibly generous husband doesn’t care much about them, so he doesn’t think about them (avoids them?)…until the last minute when there’s no denying the fact that they’ve arrived. After 21 years of marriage, I am much the same at least in the thinking ahead department. (The other person’s birthday, that is. My birthday? Oh, I care about that!)

So yesterday after realizing it really was Ben’s birthday and there was no denying it, the wheels started turning…what to do, what to do?

About 45 minutes later I was on my way to Santa Rosa to do some last minute shopping. The rain was in Biblical flood mode. I’ve rarely seen it so torrential. I asked myself, “What are you doing driving in this weather? Do you want to be the mom who dies in a car accident on the way to buy her son a video game because she was too stupid to plan ahead? Is that the legacy you want to leave?” The answer, of course, was no, but I kept on. Determined. Mission-focused. I will be safe. I will be safe. I drove a bit farther back from the cars ahead and I drove cautiously. “What is going on with you?” I asked myself. “Why is this so important?” And the only answer I had was that I had a driving need to do something SOMETHING and I knew I wanted to make him smile and feel loved and cared for and it wasn’t going to happen without this effort.

I got to BestBuy and found it not yet open. On to Old Navy to buy t-shirts, on to Trader Joe’s to buy brownie mix (even though he said he didn’t want any special treats) for a little birthday celebration at his teen meditation class’ last meeting of the year. Finally back to BestBuy to pick up the lastest hot blow’em up Xbox game. (Here I had to just swallow my motherly pinched expression…this is his game, not my game…let it go.) I was done in 45 minutes. I turned around and headed back to Sebastopol, for one more stop: our favorite bagel store. 20 minutes later, a dozen pizza bagels in hand, I was on my way home.

The house was silent and warm when I walked in. My three homeschooled boys were peacefully snoozing and I had time to wrap his presents, make myself some breakfast, and slice the bagels before the house woke up.

When Ben finally emerged from his room at about noon the fun began. He was totally surprised that I got him the game, he loved and then donned the silly t-shirt, and he ordered two pizza bagels toasted with cream cheese for, um, brunch. All three brothers went off to play the new game and I started baking brownies. About 45 minutes later the power went off. Remember the Biblical deluge? Well, trees went down and power lines with them so we had no power. No video games. No oven. No heat. No landlines. Hmmm.

It was at that moment when everything changed, that moment when Harry said, “Ben, why do you have a wet spot on your back?”

I looked, he looked. We all stood there while Ben felt his surgical wound and said, “I don’t know…”

When he pulled off his shirt and peeled back the medical tape loosely covering his incision I could see clear fluid dripping out, I would say slowly, but honestly, one does not want to see fluid dripping out at any speed, so it looked like too much too fast. Drip…drip…drip…The area around where I imagine his hardware to be (the screws holding the rod to his lumbar vertebrae) was quite puffy, too. None of this was a good sign.

A little while later I was speaking with the on-call doctor at Shriners Hospital in Philadelphia. Back and forth back and forth, between him, Ben’s surgeon, Mark… “How soon can you get here?” he asked. Ummm…WHAT?! Dr. C really wanted to see Ben, to go back in and manage the situation himself. We grappled with all the ramifications of this. We checked flights. Mark cancelled appointments for the week ahead.

Luckily, though, Mark appealed to them to consider other options. For Ben and Mark to fly to Philly is a 10 hour adventure. In his condition that really seemed like a bad choice. “If this was your child, would you put him on a plane and fly across the country?” I asked the on-call doctor.

They listened to Mark. Dr. C contacted cohorts at the Shriners in LA and arranged for a team to be ready for Ben this morning. We booked flights to LA. We had a couple meltdowns. For the second time in about two weeks we packed the hospital suitcase.

Late last night, after putting everyone to bed, Mark and I cuddled and talked about the strange path of the day. I told him how possessed I had been in the morning to do something special for our boy, and how glad I was that I had. If he hadn’t been wearing that new shirt, if he hadn’t been playing Xbox with his brothers, if the power hadn’t gone out and he hadn’t sat up and Harry hadn’t noticed the wet spot…when would we have figured it out? And if I hadn’t gotten him the game the brothers wouldn’t have had the sweet pleasure of rushing back to the TV after the power clicked back on three hours later. Brotherly bonding over blowing things up, especially when you’re feeling the full force of the loss of control of your life, nothing quite holds a candle to that.

The strange part is that the moment when Harry noticed the wet spot…we’ve been there before. That rushed me right back to when we discovered Ben’s sudden scoliosis at his 8 year well-check seven years ago. I’ll never forget that moment. All of this, the weeping wound about 2 weeks post surgery, rushing back to the hospital for another surgery, wet spots on pillows, calls to doctors and anxious waiting, is all too familiar. That time it ended up with two months in the hospital waiting and trying everything to get that damned wound to heal. This is different in some ways, but the familiarity is scary. Even Ben asked me last night, "Am I going to end up in the hospital for another two months?" And the truth is I think not, but I don't absolutely know.

Despite a day gone quickly downhill, our birthday boy shined with courage last night. At dinner his brothers were anxious about what was going to happen. Harry gets prickly. Toby gets goofy. They started fighting with each other. Ben, the middle brother, who is not usually a peacekeeper, but more of a fire-starter or pot-stirrer, spoke up: “Guys,” he said, “you don't need to worry. I will be fine. I will come back. This surgery is not very serious and it’s certainly less serious than the ones I usually have. And those aren’t very serious. So you don't have to worry. OK?” I thought he was going to say, “Hey! Why are you upset? Who’s the guy who has something to be upset about???” But no. He was beautiful. Glowing. I gazed at him all through dinner.

So instead of arguing or panicking, we ate take out burritos for dinner and had a pile of donut holes with three candles in them for dessert. We sang happy birthday almost in tune. We laughed. A lot. Ben was hilarious. So were they all. They keep me in stitches…

After dinner I took him to his meditation class. He was glad that he and “Dada” didn't need to leave until morning to get to LA. On the way home he was cracking me up. I was amazed. "I can't believe you are so funny in the midst of all of this," I said. "Are you kidding?" he said. "I can't focus on the bad stuff! Fuck that shit!" 

Yeah. 

I will keep you posted, good or bad. Promise.

And Noah Waited

This past weekend I attended my synagogue's biannual Women's Retreat. I was on the planning committee, I led all the music for services and I delivered the "drash" or sermon at Saturday morning's Shabbat service. It was a heartfelt weekend. The community we build at these retreats sends ripples out in my life. I will write more about the experience in a future blog post, but for now, here's my drash. The theme for the weekend was "liminal moments" and the Torah portion for the week was Noah (Genesis 6:9-11:32).  

 * * * * * * *

“And to make an end is to make a beginning. The end is where we start from.”

~ T.S. Eliot

Last weekend I celebrated my 50^th birthday. If you’ve already hit 50 then you know how it feels to get there. If you haven’t, then you may think it sounds terribly old…I will say that, at least for me, there is something about it, something different. I felt that difference as my past year unfolded. It was as if the whole year preceding that 50^th birthday was a kind of preparation. The many moments of introspection, of new perspectives, of fog clearing away (and believe me, as a women in menopause, the fog clearing away is no mean feat)…all of these seem to have led me to that day and then ushered me into this place I am now: the beginning of the next half century of my life!

The Torah marks the 50^th year as a Jubilee year. “…and you shall hallow the fiftieth year,” it says in Leviticus. “That fiftieth year shall be a jubilee for you: you shall not sow, neither shall you reap the aftergrowth or harvest the untrimmed vines, for it is a jubilee. It shall be holy to you: you may only eat the growth direct from the field.”

The 50^th anniversary is a golden anniversary and coming into last weekend’s celebrations for me, felt like a golden time, a golden moment. A liminal moment.

The concept of a liminal moment is popular in anthropology. Liminal moments can take many forms, but in general they are thresholds, thresholds for individuals, groups, entire civilizations. These moments can take place in a breath, an hour, a day or an epoch. Twilight is a liminal moment of time that comes every day, being born is a liminal moment that comes only once in each person’s life. A war is liminal for a country, or many, an “aha” moment is liminal for an individual who has just seen the light.

Rites of passage are liminal moments, as they mark the end of one period and the beginning of the next. We, in Judaism, have many and I’ve long felt that we are quite fortunate to be a people who still values the power of a ritual or a rite of passage to mark the various milestones in life, most importantly the bar/bat mitzvah, which marks the end of childhood and the beginning of adulthood, something that is lost to our general assimilated modern society but which is so wise and can be so profound. Havdalah is also a liminal rite, and quite meaningful in a world that has blurred the lines between the sacred and the secular.

I had never heard the term “liminal moment” before Rabbi Kramer brought it up at a Women’s Retreat Committee meeting last spring. I had never heard of it, but I had studied it for years. I am fascinated by liminal moments. I am quite interested in that period of “in between” that exists during transitions, a time that might stretch for months or years, with no apparent end in sight. Perhaps I am intrigued by these because I’ve encountered them so often in life and found the living through them to be so excruciating. Being in the moment when the moment is agonizingly painful, confusing, frightening, hopeful, electrifying, full of possibility, or even boring is an immense challenge. Changes seem to occur at these crossroads creating whole new paradigms in our lives. Imagining all the possibilities as we await the threshold-crossing-moment is oh-so-difficult. The unknown is a hard companion to sit with.

How was it then, for our hero Noah, the focus of our Torah portion this week? How did he manage to be within that twilight space…after the edict to build the ark, to collect the animals, to call together his sons and their wives… after the 40 days and nights of rain…after all that but before the next phase had begun? How did he manage to sit with the unknown?

“The ark drifted upon the waters” the Torah tells us. The entire earth was covered with water. As far as the eye could see. And “[o]nly Noah was left, and those with him in the ark.”

Only Noah was left, and those with him in the ark.

How quiet was it?

How terrifying?

All the turmoil that had come before, wiped out, obliterated by an extremely powerful and fed up God, fed up with the sins of mankind, but who chose to save one righteous individual, Noah, and his family. All that chaos that came before: GONE.

And then the water and the quiet. And the waiting.

I’m not talking about what the Lord said to Noah. I’m not talking about the floody-floody. Or the muddy muddy. I’m talking about the period in between when it was months and months of waiting for the storm to calm and the waters to recede.

Noah must have experienced that liminal moment as a man, a husband and a father, but also he experienced it for all humankind, did he not? He was our representative on Earth, living in that twilight moment, waiting to find out what comes after God’s mighty meltdown.

William Bridges, says in his book Making Sense of Transitions, that transitions involve 3 phases:

1)    an ending, followed by

2)    a period of confusion and distress, leading to

3)    a new beginning

If, in the first phase, you don’t acknowledge the ending, says Bridges, you can’t move forward toward a new beginning. A transition, then, is a very special thing. It begins with an ending.

Reading this on the tail of the first stories of Creation, we might think of Noah’s story as the “end of the beginning.”

The end of the beginning.

Bridges also says, “We have to let go of the old thing before we pick up the new—not just outwardly, but inwardly, where we keep our connections with the people and places that act as definitions of who we are.”

Did Noah, looking back at the chaos from whence he came, did he think of it in that way? Did he take store of humankind’s sins and consider how he and his offspring would move forward to create a better world? Or, did he suffer in the silence, anxious about whether or not God would truly spare him after all this, the ark, the cubits, and the animals two by two? All the definitions Noah had were gone.

“The ark drifted on the waters” of what we might think of as a Neutral Zone, a place with no place and no time and no definitions.

As Noah and his crew floated out there, somewhere (who knows where?), they embodied that Neutral Zone for all humanity. It’s Phase 2 of Bridges’ transition triumvirate, “…a strange no-man’s land between one world and the next…,” “…a low pressure area…a vacuum left by the loss…” During this period of waiting, this confusing and disorienting time, what did Noah think about? How did he feel? Was he afraid? Was he lonely?

In her book The Beginning of Desire:Reflections on Genesis, Scottish contemporary Torah scholar Avivah Gottleib Zornberg says that [in Noah] “…for the first time we are given a sense of human loneliness, as time is endured, as Noah waits for something new to begin…” and that Noah “prays to be saved from the prison of the his ark.”

“Noah,” she says, “like every faithful man,” prays to be saved from the “rushing mighty waters” [shetef mayim rabbim]; the undifferentiated dumb violence of the world just outside the prison of the ark. The prison is both the closed space of the ark and the too-great openness of the wild raging silence beyond.”

Just about seven years ago my family embarked on an odyssey when our middle son, Ben, then just 8 years old, was diagnosed with Chiari malformation type I. At his eight year well doctor’s visit he bent over for the scoliosis check and the sight of a huge lump (actually a hump) on his back caused me to literally leap up out of my chair. What came next were x-rays and MRI’s, urgent doctors appointments, calls and emails to everyone we knew for information about hospitals and neurosurgeons. Less than two months later we were sitting in the cafeteria at Children’s Hospital, Oakland while he underwent brain surgery for 10 hours.

What I didn’t know then was that that was the end of the beginning. We were entering a very long period of transition, one we still inhabit.

Those first months as we moved to the head of the class finding out more than you would ever want to know about brain surgery and cerebellar tonsils, those first months were only the tip of the iceberg of our period “floating on the waters.”  What was supposed to be a veritable “walk in the park” by neurosurgery standards became two months at his ICU bedside watching the doctors scratch their chins in puzzlement as he would not heal and would not heal...and would.not.heal. He endured four surgeries in those two months, though he was only supposed to have the one. He endured many more painful and frightening procedures during that time: needle pokes and blood draws, huge sticky bandages pulled off (quickly or slowly, it did not matter), stitches made without anesthesia. And I stood by, blowing cool air on his face, holding his soft little hand in mine, guiding his mind with images of Hawaiian beaches to calm him or superheroes to give him strength, organizing poker games for him with his loving uncles and dad, urging him to smile with ridiculously inappropriate TV and movies. It was a period of twilight for me, and I would agree with William Bridges’ assertion that time slows down in that zone.

What I didn’t know then was that because of the Chiari and the fluid pocket that had formed in his spinal cord, his spinal nerves had been compromised and the scoliosis he was left with would be severe. And require more surgeries.

Today, we still drift in those waters. They have not cleared as yet. In about three weeks Ben will head to Philadelphia with my husband, Mark, to have his 11^th surgery, at Shriners Hospital for Children. He has been getting treatment there for the past three years, treatments that have held off spinal fusion and allowed his spine to continue to grow, but that have required him to spend more time in the hospital, more painful procedures, more time away from home. Within his back he has a 17 inch titanium rod and 5 staples. We have no idea when all this will end, or what it will end with.

Last summer, as we were approaching his 9^th surgery I felt somehow that I just couldn’t take it anymore. I was so drained, physically, emotionally, mentally, spiritually from the never-endingness of it all. Ben was drained too, and that of course was HUGE for me. Ben was suffering from bouts of depression and anger and his constant back aches caused my own back to ache and my heart to ache, as well.

But, last summer I was standing out by my pasture, breathing in the cool morning air and I was perseverating on it all. When would it end? What would happen to Ben? Where had my happy, healthy boy gone? What was it like to not be constantly worrying about a sick child? I was finding it incredibly hard to just be with my life, sit with the unknown. And then it hit me: This is your life. Be in it. Be in it right now.

That “aha” moment, or as I like to think of it, My Moment of Zen, really helped. It helped me accept the truth and to live in it with not only the courage to deal with it, but the courage to see that the only thing that I could do was stay in the present moment and accept it. The past needed to be let go. The future was on the other side of the threshold.

I believe it’s quite necessary to survive the liminal moments that feel like an eternity. I believe it’s important to look to the future, to imagine what will be. But I also believe that it requires great courage to stay with the pain and the fear and the racing heart in the moment, the moment that may be dark or foggy or so terribly unclear. It is within those moments that we have the potential to uncover the truth about who we are, what we are made of, and possibly even why we are there.

And then, there are times when we don’t find out the whys until long after the transition is past. Looking back on events in our lives is when we can count the blessings or see what we learned from that very taxing teacher.

And so, what about Phase 3? The new beginning?  What about after the floods receded and Noah threw open the doors of the ark to let the sun shine in? What then?

I can imagine that it was not easy to take the next step, down the gangplank, to the damp soil of Mt. Ararat. The Torah says “God spoke to Noah, saying, "Come out of the ark, together with your wife, your sons, and your sons' wives. Bring out with you every living thing of all flesh that is with you: birds, animals, and everything that creeps on earth; and let them swarm on the earth and be fertile and increase on earth." It might have been an obvious direction. But, perhaps, God noticed Noah’s hesitation. After all that waiting, after all that time spent on the waters, walking through that doorway might not have been anything short of Noah’s most courageous move.

According to Aviva Gottleib Zornberg, “What Noah experiences when he is released, is the subtle gratitude of one who now realizes the implications of where he was and where he is. The history of Noah is, then, the history of man’s first exercise in self-construction. Between the worlds of kindness and ecstasy, between closedness and openness," she says, "Noah reads and interprets the test of God’s words and of his own heart.”

“We come to beginnings only at the end,” William Bridges tells us, “…changed and renewed by the destruction of the old life-phase and the journey through the nowhere.”

Have you ever walked from one room to another, on an errand to pick up something but by the time you got there you had no idea what you had come for? Did you know that psychology researchers have a name for that? It’s called “the doorway effect” and what they have found is that walking through a doorway causes you to have a lapse in short-term memory. According to the Scientific American, “walking through a doorway is a good time to purge your event models because whatever happened in the old room is likely to become less relevant now that you have changed venues.”

How interesting.

And we have learned that liminal moments also seem to involve that same loss of memory, or what could be seen as a death. One definition I found said: “a liminal moment involves a metaphorical ‘death’, as the initiand is forced to leave something behind by breaking with previous practices and routines.”

We can view our lives as a linear series of chronological events and as circular, beginning leading to in-between leading to ending leading to in-between leading to beginning again. The seasons of the year are this, the cycle of water from particles in the atmosphere to rain to raging waters of a river to the vapors over the ocean are this as well. The holiday of Simchat Torah is a ritual we Jews have to acknowledge the cyclical journey we take through the lessons of the Torah every year, unrolling and rolling, reading, singing and dancing our love for the book we cherish.

Noah’s time spent drifting upon the waters came to an end with a beginning, a new beginning for humanity. After many, many months drifting there in that no-time-no-place the waters finally drew back, the land finally dried out and marching off the ark they all came, to begin again.

Today at 50, I am all that I was before I arrived here at this new phase in my life. I am the consummation of my experiences, the thresholds I have crossed, the pain I have felt, the mistakes I have made and the joy I have shared. The course of my life has meandered along like a river’s course and I can sit with the events the way they have unfolded, knowing that they have brought me to where I am today. No regrets, just gratitude.

In his book The Way of Transition, William Bridges says, “You can talk about transition in either context. In the linear context, it’s the segue between one life-segment and the next, as well as being the process that disengages us from the first phase, turns us around, and plugs us into the second phase. In the circular-journey context, transition is an analytical way of talking about the journey itself.”

I suppose that’s the key for me: the journey. I have always been less interested in the destination than I have been in the journey. My personal journey, Noah’s journey, the journey of humankind.

Surgery the Sequel: Chapter Four

I was visited by a memory this morning. It swooped in on me as I trudged up the stairs after feeding the equines and cleaning the pasture, kicking off my boots in the mudroom, and padding past Ben and Toby sitting on a window seat happily engrossed in a game of Magic: The Gathering.

The memory is this: I am sitting on our cushy love seat, Toby tucked in close on one side, Ben on the other. It is the day after Ben has finally, FINALLY come home from the hospital after having four surgeries for Chiari I malformation, two months to the day since the first surgery took place. I am feeling that I never ever want to be away from my children. I want to keep them home, next to me, safe. Whatever it takes.

Deja vu.

Ben is home again, and he is almost pain-free. He appears lighter in body and spirit. He is calm and even. Happy, considerate, grateful, mellow. He has focused on Toby and playing with Toby all day, much to Toby's intense happiness. The baby brother really REALLY missed the older one.

Driving Ben home from the airport last night we talked about being apart from each other while he was in Philly. "I'm going with you next time," I said.

Silence.

"Weeeeell, I don't think so, Mama," Ben said. "Daddy can move me, help me get up, reposition me," he paused, "I really need him for surgeries...and he doesn't mind helping me pee into a bottle."

Well huh. I protested a bit. ("I don't mind helping with the pee bottle!") But, I guess I can handle this.

I just want everyone to know that we're all lighter here today. We're at peace because our Benny is doing so well. Mark's coming home early from work, it's Make-Your-Own-Burrito night for dinner, and the piles of dirty laundry are scattered in front of the laundry room door. Life is getting back to normal.

But next time (9 months from now, according to Ben's surgeon), next time I'm going with him. (Anyone know of a place that I can order an extra large duffle bag from?)

Of Bribery and Rollercoasters

Picture this: Ben is reclining in his hospital bed, fully rigged out in his “Shaky Jake” vest, the contraption that makes him look like he’s undergoing some rigorous protocol for NASA or something. The vest, filled with air through two hoses, is shaking him at 10 Hz (10 hertz = 10 shakes per second, or as Ben says, 10 HURTS!) for 20 minutes. His mouth and nose are covered with a mask and a foul smelling mist is blowing into it which he breathes and which purportedly helps to fill his lungs with oxygen, break up the mucus that has taken up residence there, and allow him to heal. Suddenly, he begins to hum. It sounds like the theme from Mission Impossible to me. This is entertaining! I join in, but I have to hammer on my chest to get the same effect. I break into Darth Vader’s theme song from Star Wars. He joins in. And just then, Lorenzo, our big teddy bear of a respiratory therapist comes in to check on Ben’s progress. “Lookin’ good,” he says softly. “Lookin’ good.”

Today was quite the rollercoaster. There were a few moments like the one above and then there was the walk down the hall that made Ben turn a shade called “Cement,” ask for a chair, and ultimately return to his bed to vomit up his breakfast. Later in the day, his face ashen, dark gray circles around his eyes, I couldn’t believe how much worse he looked from yesterday when his cheeks were flushed pink and he chatted with friends on the phone. In fact, I couldn’t believe how much worse he looked from 11 am this morning when he checked my profile on Facebook and wrote a comment back to our friends about how he was doing. Up and down. Down and up. I must admit, I’m exhausted to the edges of my eyelids tonight.

When we were first planning this event (How should I refer to this? Adventure? Journey? Certainly not vacation…), this experience…I was told to expect he’d be discharged about five days post-surgery. That seemed a bit “hopeful” to me (SARCASM). I mean, he was having two major surgeries in two locations on his body. But I was told most likely we’d be out by Friday or Saturday. Call me a skeptic, but after what we went through the last time he had surgery, deemed a “walk in the park” for neurosurgery, I was hesitant to take that 5 days at face value. For one thing, Ben’s only about the 14th kid to have the rod and staples done, and it’s even a lower number if you count having them done at the very same time. What I’m trying to say is, he’s not getting out so quick. Today was day 4 post-op, tomorrow day 5. At this point we’re looking at Monday.

This feels a bit like déjà vu. Ben is generally a healthy kid. He rarely even catches a cold. But when he goes through surgery his body does not seem to bounce back. It reacts as if it has been assaulted. Red flags up. All systems down. Like a deer in the headlights. I believe that one of the most difficult aspects of both this surgery and his Chiari surgery four years ago is that pre-op, if you looked at him he seemed just fine, and his body thought it was fine. It wasn’t like he was in pain or an invalid. The surgery was an imposition. The surgery was traumatizing.

No one at Shriners seems overly concerned about this lung issue, though for me, the mama, this was my biggest fear about the surgery. It was the complication I knew was out there. My friends in the medical profession all are familiar with the “shake and bake” (as my friend Nurse Shawna calls it) and, I suppose, it’s a necessary evil…does the job. Lungs collapse. The “shake and bake” opens them up again. I don’t know though…it sure sounds critical and scary to me.

Yesterday, I noticed that Mark was being sort of a softie with Ben about his lung exercises. He wasn’t pushing Ben to try harder to inhale deeper. I would sort of lean on him…”Come on, you can do more than that!” I'd say when he didn't seem to be trying very hard and I’d notice Mark furrow his brows at me with a “lighten up” look. Today I realized we needed to push him despite how hard it was for him to breathe deeply. It was a Catch 22. If he didn’t breathe deeply more often he’d be unable to breathe deeply at all. And the last thing I wanted was for pneumonia to develop. I took to lecturing myself about being strong, not backing down. But as I sat at his bedside it finally dawned on me that pressuring him wasn’t going to work. So, I considered…what does work with Ben? Aha! Cold hard cash.

Me: “Ben. Ok. Listen to this. I am going to pay you for your breathing exercises. Every time you get the inhaler up to 750 ml I’ll pay you 75 cents. If you get it to 1000 ml I’ll pay you $1. 1250 ml, $1.25. Understand?”
He narrowed his eyes at me. He raised one eyebrow.
Ben: “I’m going to make you go bankrupt!”
Me: “That’s a consequence I’m happy to endure. Oh, and that lung vibrator thingee? [another one of his lung exercisers that helps bring the mucus up] I’ll pay you $1 for every 20 blows OR one hack up of phlegm, whichever comes first!”
Ben: “It’s a deal!”

Needless to say, bribery works. You know, it’s been proven. Look at the Texas school system. And Ben, well, he’d earned 34 bucks three hours later. My friends on Facebook, apprised of the situation, have already begun to take up a collection. Hey, if it gets us out of the hospital sooner, it’s worth every freaking penny to me, and apparently to them, too. Love you guys!

Can you say "Ahhhhhh"?

The change is palpable. I felt the difference from the moment we left home: a sense of release because we were finally on our way, finally done waiting for that moment to arrive.

I sit now in Grandma Joyce’s living room listening to the tinkle of Ben’s laughter coming from the kitchen where he and Mark complete a crossword puzzle. There’s been a lightness in Ben these past 24+ hours that I haven’t seen in weeks. Even though his VBS/Hybrid rod surgery is still looming, we are all feeling a sense of ease about it now. It’s not just inevitable, it’s the best option for us and we’re here, we’re going through with it, nothing’s standing in our way. Not snowstorms or germs or anything.

Yesterday morning, as I collected the last minute items for our trip, I watched Harry and Ben hugging in the kitchen. Ben burst into tears, sobbing, “I don’t want to go have surgery!” and Harry held him tightly, bestowing a big brother bear hug he’s obviously been perfecting. It was a moment that I appreciated all the more after the squabbling and lashing out of the night before.

Sherry and her kids arrived to stay with Harry and Toby for the next couple days, Deborah arrived to drive us to the airport. (Friends have been “showing up” for us in so many ways lately. This is the golden light. This is the silver lining.)

The urge to move forward helped us be timely. Group hugs on the porch led to good-bye waves from the boys and friends we were leaving behind. We stuffed our immense luggage into Deborah’s little car and were on our way.

(The boys at home have checked in with us periodically since then. It was clearly a harder transition for them since they stayed behind, as my friend Sherry noted. But even for them, there was relief in finally getting through the moment we’d all been dreading. The line between Before They Leave For Surgery and After They’ve Left For Surgery had finally been crossed.)

In a nutshell, our travel day was smooth and the mood light. We arrived at the airport, unloaded our luggage (and payed the extra $30 for our 4th bag!), grabbed some brunch (Ben had “the best orange chicken” he’s EVER had!), headed to a quiet, unpopulated corner of the waiting area and disinfected it with our anti-bacterial wipes before “plugging in” to our technology. We’d talked about wearing sterilized masks for the whole day to stave off the unbelievable amount of germs that must be lurking there in every corner, but I chickened out once we arrived at the airport, feeling self-conscious. You know me, fashion over cleanliness, right?

Well, once we boarded the plane Mark and Ben donned the masks like good little patients. Mark’s philosophy: “Wearing the masks is good for two reasons, it makes people think you’re crazy or you have a contagious disease. Either way they avoid you.” No one sitting near us was hacking or sneezing, a plus. We disinfected our armrests and tray tables and our hands frequently, and keep popping the vitamins.

I surrounded myself with knitting while keeping one eye on the little TV screen on the back of the seat in front of me. My knitting project plans have been keeping me distracted, if not happy, while preparing for this trip. I brought along about seven Ziploc bags of yarn for a variety of projects AND ordered more yarn to be delivered to the hotel while I’m there AND have already scoped out the yarn stores near the hotel for those slow days after Ben’s been released from the hospital and is busily playing video games in the hotel room, I mean, recovering. My obsession with knitting is not a cause for alarm, it is still harmless, I believe. Like any of my crafty endeavors, I find the process totally absorbing and diverting. The knitting itself is meditative, just the thing when your sweet one is in surgery or recovering. And as the garment emerges, a soft pool of color in my hands, I get a tremendous sense of satisfaction. There’s really nothing else like it. Keeps my mind and hands busy and produces something beautiful in the end. Projects started: ice blue sweater, jewel tone beanie, blue scarf. Projects waiting in the wings: blue and yellow baby hat, fuzzy blue fingerless mitts, black and pink fingerless mitts, blue vest…and more.

Arriving in NYC, driving to Grandma’s house, we could see the piles of snow everywhere. For Ben and me, this was a first, as Ben says, to see so much snow in a populated area.

We couldn’t wait to get outside this morning to take a walk. The weather is cold, but not bitter. We were so lucky to have missed the blizzard that hit the day before we arrived! Sun was out and the snow was glorious still, not that ugly gray slush you get in a city after a big snow.

At one point, Ben trudged into the middle of Grandma’s front lawn and announced, “I’m going to make a snow angel!” at which point he flomped down, face first in the snow. “Ben. Most people make snow angels on their backs!” Mark informed him. “Oh.” And he righted himself immediately.

There’s something to be said for giving yourself extra time. Having planned to arrive a few days early to allow for weather issues meant we had time today for a late wake up, a walk through the snowy neighborhood, snow angels, snowmen, and snowball fights. Ben spent the late afternoon building a snow fort in the backyard, directing Mark to go upstairs to open the window and snag the best and longest icicles from the roofline.

At 5 pm we sent Grandma off to our great niece’s baby naming ceremony in Scarsdale. We were sorry to have missed it and would have gone, but being as crazed about germ exposure as we are right now, we decided to pass and stayed home to have a quiet pizza dinner from our favorite pizza parlor in New Hyde Park, Umberto’s.

When Ben came in from his snow extravaganza and had changed into snuggly warm sweats, the three of us sat down and listened to a guided meditation recording called “Preparing for a Successful Surgery” which Ben deemed boring and irritating, but what can I say, I got very relaxed!

Throughout this whole year we’ve been avid participants in an online forum for the parents of VBS patients. From that web source we found out about the technique and the amazing doctors at Shriners. Coincidently, one of the forums’ founders is a mom who lives with her family not far from Grandma Joyce, so tonight she and her 11 year old son David came over for dinner (I made sure they were, in fact, germ free!) and it was wonderful to chat and get to know them better.

Maria is petite and funny, with a strong side to her that is a model for me. (Mark says she’s a real New Yorker.) She is someone who gets what she wants, especially when it means the best for her kids. David, like Ben, had his scoliosis diagnosed first which then led to the diagnosis for Chiari. He was only an infant at the time! He had his VBS surgery several years ago, he was one of the earliest patients. And Maria is now a vocal advocate for Shriners and the techniques they innovate there for scoliosis patients. We had a great evening with our online friends. It was just like the rest of the day, positive, light and full of laughter.

Tomorrow we will head to Philadelphia where we’ll check into our ritzy digs.

More then…

and now for some scenes from our snowy day...

New Bends in the Road

(Photo at left is of Ben in his ice hockey helmet!)

Oddly enough, I feel the desire to rev up this blog's engine again. (Never really got it going before, but my previous posts were pretty sweet...) We are going through some challenging times in our family now/again and rather than repeatrepeatrepeat myself on email, on the phone, in person, I think it will be easier to have you come here to check in and find out the scoop.

The challenges are medical and with Ben again. In February, a new x-ray was taken of his spine and we discovered that his scoliosis (spinal curvature) has progressed from 28 degrees in 2007 to 35 degrees. This is not happy news. Since then we have been searching for a treatment plan and it's still not clear what we will do.

To back up, in late 2005 we discovered Ben had scoliosis at his annual checkup (8 years old). We went for x-rays and were sent on for MRI's (to rule out worse conditions). Turned out we had one: Chiari I Malformation and Syringomyelia. This means his cerebellum was too big, blocking the flow of spinal fluid from his spine to his brain. They Syringo part means that there was a pocket of fluid (syrinx) trapped in his spinal cord and as it expanded it pressed on the nerves of his spine and created a weakness there. Hence the scoliosis. Or so we thought.

We went to Children's Hospital, Oakland, for treatment: a decompression surgery (brain surgery) on February 1, 2006 and after way too much trauma and drama (i.e., infections on the incision site, infection on the brain tissue, fevers that wouldn't go away, leaking spinal fluid, wounds that wouldn't heal, four surgeries instead of one, etc.) finally returned home (to stay) on April 1, 2006, a full two months later.

He was monitored by the neurosurgeon at intervals throughout the following year. And at the last MRI (April 2007) we were told no need to come back to neurosurgery for at least 2-3 years. BUT, we were not told to monitor the spine and so, it wasn't until we went in to see our neurosurgeon, Dr. Sun, in February (because Ben was having recurring headaches) that we were asked to do an x-ray.

Now that we look back we really wish we'd had more information. Like, the fact that since there's so much scoliosis in both sides of our family it's quite possible that Ben has a genetic type of scoliosis. That we should have been monitoring Toby and Harry as well. That Ben should have been monitored with x-rays more frequently over the past two years so that we would know if this has been a gradual change or a rapid, recent one. That perhaps Ben should have been in a brace since after the Chiari surgeries.

It's hard to know.

We've now taken MRI's as well. The Chiari has not returned (it can), thankfully. The headaches have gone away (not sure why). What we know now is that there are several paths we can take to address the scoliosis (whatever it's genesis) and none of them has a clear outcome and only a few are palatable. After what he's been through. After what we've been through.

Anyways, enough for now. Later I'll post our options as we know them now, and you can always check back for updates.