Gratitude list

I learned long ago that there is a huge silver lining to our challenging situation. Here is my gratitude list for this trip:

Modern Medicine: We originally came to Shriners (Philadelphia) for their progressive surgical techniques for scoliosis patients. We had two goals: keep Ben's spine flexible and let it grow. We were fortunate to be selected for their care, their expertise and their mission. Dr. Betz (who innovated these techniques) and Dr. Cahill who was Ben’s first surgeon in Philly started us out on a great road. We accomplished the second of our goals largely due to Dr. Cahill’s belief in and skill with these techniques. When we met Dr. Cho in Los Angeles last November we were immediately impressed with him and felt confident that moving Ben to his care would be a positive choice. His skill, confidence, and vibrant demeanor (ok, he’s got a great smile, a great sense of humor, is an excellent communicator, and a snappy dresser) convinced us to move to the LA hospital. Being closer to home both for the pre/post-op visits and for the surgeries has made a huge difference for us. So glad to be in the care of such excellent doctors!

The Kindness of Strangers: While I was planning for this trip I was trying to find a good place to stay while Ben was in the hospital. Near the hospital but in a safe neighborhood. Affordable. Comfortable. Homey, if possible. I kept coming up short. The hospital is in a not so great neighborhood and I couldn’t find a solution that felt like a good fit and was something we could afford. That was when my friends Barbara and Madeleine told me to talk to Paula, someone I know peripherally from my days in LA teaching music at Sholem, a secular Jewish community Sunday school, and who is a friend of theirs in Sebastopol. “Ask Paula,” they both said. “She still knows lots of people in LA.” So I did. Paula put out an email one Sunday to the Sholem community and by Monday I had a response from Susan and Marc Sazer inviting me to stay in their guest room in the Larchmont neighborhood of LA. We spoke and I accepted and…a friendship was born. I am BEYOND grateful for their openheartedness in taking me in. What I got from staying with them was not only a convenient and comfortable place to stay within 10 minutes easy drive to the hospital, but, a loving, warm, and beautiful home to return to every night with friends who wanted to know how I was doing and how Ben was doing. Their dog, Goldie, was my happy companion during the three days they were gone (setting their daughter up at Sonoma State for her freshman year, happy coincidence!), greeting me the way Corgis do, so delighted to usher me through the house to my little guest cottage in the back. Goldie made me smile and kept me company. Susan gave me hugs and a welcome ear to hear of the day’s ups and downs, and Marc uncorked some great wine and grilled up some tasty lamb chops on my last night with them. I deeply believe that what you put out into the universe comes back to you…and I told Susan that they are another link in our chain. (And who could argue with the lovely coincidence of another Susan and Mark/c?)

The Kindness (and tolerance) of Relatives: My gratitude list would not be complete without a full blown kiss and hug and thank you to my aunt and uncle, Adele and Sheldon Miller. They took us in (even a couple days earlier than expected) for over a week and tried to take care of our every need (though we sometimes said, “No, Me Do It!” like toddlers). They wanted nothing more than for us to be happy and healing in their quiet and luxurious home. We got nightly runs for frozen yogurt or pizza, daily runs to Sprouts or Costco. The most comfortable beds were ours for the asking. Wide screen tv. Wifi. We spread out in every bathroom and extra bedroom. And finally, yesterday we got to jump (or wade cautiously) into their sparkling blue swimming pool (Dr. Cho gave Ben the go-ahead for that Tuesday). We enjoyed their stories, love, hugs, and tasty dinners. Thank you thank you thank you, Sheldon and Adele.

Harry Miller: While we were in LA Harry held down the fort. This is not the first time he’s stayed home while we were in LA, but it was the longest time and he was alone for most of it. Not only did he take care of himself and the whole house and all of our critters, but he did it while starting a job at the Sixth Street Playhouse making props for Spamalot, getting hired to be assistant stage manager for that show, and starting a new semester of classes at Santa Rosa Junior College. We’re so grateful to you, Harry, for doing all that for our family, and so proud of you, too.

Toby Miller: Toby was away at camp until moments before Ben and I went to LA for his surgery. We saw Toby for a couple hours in between picking him up from the Camp Tawonga bus and dropping Ben and me at Oakland Airport. After that Toby, otherwise known as Mr. Flexible and Good Natured, went on a whirlwind tour of friends and family staying with: the Boss-Talmans in San Francisco, Cousin Joel in San Francisco, the Nixons in Cloverdale, the Grovers in Oakland, and finally Nana in Oakland. I heard from him every other day or so. He missed me (us) but he did just fine and from all reports he was a good guest and fun to be around. I’m so proud of him. It’s a wonderful life skill to be able to go with the flow and be polite and accommodating and accepting of other people when you’re under some amount of stress (worrying about your brother and missing your family) for an extended period. Proud of you, Tobe.

Friends: Many, many thanks to those folks mentioned above who went out of their way to care for Toby, get him to his next caretaker, feed, clothe and entertain him, and in many ways ease my mind so completely that I had no worries about my baby. That was such a gift. Thank you all so so much.

More loving friends: To the many friends who drove way out of their way to come take care of me, of Mark and me, and Ben with goodies, companionship, and distraction during our two plus weeks here in LA: THANK YOU. You made this period almost feel like a vacation, and I so appreciate that.

Today we head back into LA to visit my lil’ sis, Jenn, and then off to the airport to return home. Looking forward to seeing my honey back at our lovely little rinky-dink Santa Rosa Airport, and all my boys back at Three Boys Farm (and yes, that includes our two cats, two mini-donkeys, and our horse). So glad to be returning with a hale, healthy and TALL middle boy. It’s been quite the time.

Perspective

Ben taking a walk around the 2nd floor with his physical therapist.

Today when I arrived at the hospital I could tell Ben was feeling better, much better. His face was light, his eyes bright. A smile curved at the corners of his mouth.

I knew immediately he had good news.

Ben’s putting the hospital staff out of business. He is a poster child for recovery. He’s being discharged tomorrow (and honestly, if we wanted to leave today, they’d okay that too). The physical therapist, nutritionist, recreation specialist, and intern have come by and said, “Well, you’re looking good, man, you’re good to go.” I think they’ve even sort of shaken their heads in disbelief.

Truth be told, I think Ben is an unusual patient at Shriners. Believe it or not, his situation isn’t as dire as some.

We’ve had more than our fair share of time at hospitals. Ben has been a patient at Alta Bates in Berkeley, Children’s in Oakland, Shriners in Philadelphia, and now Shriners in Los Angeles. There’s something different about hospitals that cater to children only. There’s something more heart-wrenching about the children and families you see in those hospitals.

When we were at Children’s Oakland for Ben’s brain surgery ordeal we were newbies at this hospital business. I’m the type of person who likes to connect, who needs to connect. But a hospital, especially a children’s hospital is not a place to connect, especially not with the other parents. For one thing, everyone is entirely consumed with anxiety and worry about their own child. Many parents are on edge. Most just don’t have one extra molecule of space for your story or your child’s story.

And then there’s the issue of whose child has the worse situation. Here’s the deal: If I ask you why you’re here, and you say, “My child has a brain tumor,” then you win. I mean, you lose and you win. You have the worse condition to contend with. But if you say, “My child broke his ankle,” then I win. And guess what, I really don’t want to win. Do you know what I mean? It’s a terrible, terrible place to be in, so it’s just easier to not engage with the other parents, if at all possible.

When we were at Children’s Oakland we were there for so long we had to connect with someone. So, we connected with the nurses and physical therapists and chaplains. I would ask them questions about their lives or tell them something about us that wasn’t visible on the surface or in Ben’s medical chart. We’d try to find safe ways to make connections and get support and solace, that’s what our friends and relatives were for. We barely looked the other parents in the eyes.

Last time Mark was here at Shriners Los Angeles, he encountered a dad who hadn’t learned that yet. He wasn’t a newbie at hospital etiquette, but for some reason he hadn’t gotten the memo. He and his son were sharing a hospital room with Mark and Ben, and Mark had to hear their whole story, despite his desire to do anything but. There wasn’t an easy way to get out of it. He was stuck there. They all were. And guess what, the other dad won...his child had the worse condition, and still he didn't get it. DON'T SHARE. (No boundaries, right?) And when he returned home, Mark shared with me how uncomfortable he felt when that dad, just seeking companionship and connection, reached out and in way too far.

The fact is that children’s hospitals are brutally painful places. Despite the cheerful décor, the play rooms and video game consoles, you cannot escape the unfairness of life in a children’s hospital. Here at Shriners, where patients are given FREE* medical care with some of the most innovative techniques to be found anywhere, there are children from every ethnic group, many third world countries, and speaking many different languages. And, they have many different afflictions, most of which make Ben’s situation look like a walk in the park.

It’s a strange thing. In our world—and by that I mean our relatively affluent homeschooling, organic, politically liberal, well-educated world—Ben has possibly the most serious condition of any of his friends. He’s had more surgeries than any group of people I know. I think almost everyone in our life views his situation as one of the scariest and hardest situations that they know of.

But, one hour in Shriners Hosptial and your view of hardship changes.

When we arrived at Shriners Philly for Ben’s first spinal surgery it was about a month after the earthquake had happened in Haiti in early 2010. Teams of Shriners doctors (and doctors from many other hospitals, for that matter) were flying down to Haiti to care for the devastated populous. Shriners had actually been flying children and their families up to the hospital in Philadelphia, an orthopedic specialty hospital, to give them their care. We were confronted with children in wheelchairs, all with recent amputations, wheeling around the atrium, the play areas, the hospital rooms.

They were beautiful, these children. They were happy. I’m not kidding, they were always laughing and happy. I couldn’t believe it. That part was really different. But seeing them and their bandaged stumps, that was truly one of the hardest things I’ve ever experienced.

Shriners LA is not much different. It’s not post-earthquake, at least not of epic proportions. But each child there, each family, is experiencing their own personal trauma. Last Wednesday, when Ben and I arrived in reception for his pre-op appointment, he was the only child not requiring a wheelchair or walker or arm braces. He was the only one.

It put his upcoming fusion of 12 vertebrae into some kind of raw perspective.

I used to have to take anti-anxiety drugs to manage this reality. But I’ve found on this trip that other people’s situations are not getting in. My defenses are stronger. I have my empathy turned down really low.

The other thing, frankly, is that I know that here is where these folks are getting some of their needs met. The doctors are so skilled and these children are getting the best medical care. It’s a place full of blessings, really.

We’ve spent the past five days ensconced in Ben’s quiet private room. There are hardly any long term patients here (he was literally one of only three over the weekend…it’s a bit odd, really). The buffer between us and the rest of the world is nice and thick. I like that. It helps with healing.

As for now, Ben and Mark are enjoying an old favorite activity from our first lengthy hospital stay, watching reruns of Family Guy. (I just told the nurse that it offended me 7 years ago and it offends me now!) But, it makes them both laugh, and that’s just fine with me. Seems entirely appropriate to be doing this on, ostensibly, hopefully, our last night in the hospital.

And by the way, I told Ben after the intern checked him out and told him we were free to go whenever, I looked Ben in the eye and said, "You're too good at this, mister. Time to get good at something else."

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*Shriners Hospitals (And yes, I am spelling it correctly. There is no apostrophe.) have a very interesting history. If you are moved to make a charitable donation, I urge you to do so. This institution has taken a big hit in the current economy. Half of this hospital is closed down and that is a damn shame. We need more institutions like Shriners to innovate in medicine and care for underprivileged children.

Rollercoaster

rollercoaster: resembling the progress of a ride on a roller coaster in sudden extreme changeableness.

Day 3 post-op brought us these high and low lights:

• No fever to return of fever and back again
• A walk around the entire second floor of the hospital with a walker to too much pain to walk and back again
• No pain to fear of having pushed too hard and back again
• Appetite to no appetite and back again
• Joking to moaning and back again
• Bright eyed to depressed and back again

This is life in the hospital. Thankfully the day ended on an up note. Mark texted me to let me know that Ben made a comeback, walking successfully around the whole second floor again and half of it without the walker.

Today I saw in Ben a focus on success. I observed almost a warrior’s determination in the line of his mouth as he strains to get himself from lying down to sitting to standing, and back again. I cannot imagine the amount of resolve it’s taking him to believe in himself, believe in his muscles to do this work, that hardware to hold together. I can only see it in the intense effort of his body. The look, straight ahead, unwavering, of his eyes. He is so strong, and by that I am referring to his will, not necessarily his muscle.

But I also saw his tender little boy side, when after attempting to get his digestive tract moving again (three days under morphine are not helpful…add to that the physical situation of a spine that won’t bend, and a newly healing incision 6” above your bum…the psychological impact of all that is not to be downplayed) he felt that he’d strained his lower back and returned to his bed in terrible pain and even worse self-esteem. He blamed himself for hurting himself. And if he could have, he would have curled up into a ball. But, that is not a pose he is ever going to be able to take again.

He raised his hand to me to hold (earlier in the day he hadn’t needed me nearby at all), he whimpered when I said I’d be leaving soon to go home. He held onto my hand with both of his. He lay with his eyes closed, pain across his brow.

I told him to believe in himself and how hard he is trying. I told him that this is the rollercoaster of recovery…up and down and up and down and eventually, up again. The more you push through the sooner you’ll get off the ride.

I told him that accepting that it’s going to be like this will ease his struggle some. But the truth is, we just have to hang on till the car comes to a complete stop. I'm looking forward to getting off this ride.

And as I thought about this rollercoaster we're on, this song from my early teen years 

popped into my head! Cracks me up...and a little levity (and music) is a very 

good thing! "Love Rollercoaster" from the Ohio Players.

My most important hospital job

It was only with the greatest powers of self-control that I did not burst into tears in front of Ben today. You can imagine why I don’t want him to see me cry. I’m supposed to be there to support him, not to make him wonder if there’s something he should be crying about, or to feel responsible in some way that he made me cry.

I looked away. I looked up at the clock. Don’t cry. Don’t cry. Don’t you dare cry. And then I looked back at his beautiful face, a sheen of sweat and oil from three long days in the hospital, fever and exertion as well as strength and grace shining there. And I got myself under control.

He had just gotten from the bed to sitting to standing to walking a few steps and turning around to sitting down in a high-backed wheelchair. That, my friends, is an amazing feat. I had been sitting across the room  tapping away on my thumbs and forefingers. My eyebrows had been plastered up somewhere near my hairline. My lungs were not moving. My mouth might have been hanging open. It was a tense moment for me.

But, he did it, my boy did it (despite, I hate to say, two nurses lacking, um, finesse). And then said he was feeling nauseous. So, at that point I came over to hold the salmon colored plastic basin under his chin. Mark stood behind him holding an ice pack on the top of his head. He was adjusted to an angle that was comfortable. He was looking straight ahead.

We just were there, having a family moment, I guess you could say.

And suddenly I was flashing back on his birth and how he came a little early and had trouble regulating his body temperature so we spent days in my bed, skin to skin. I was right back there in those first days of his precious life, holding his little naked body against my naked chest under piles of warm quilts. And those were some of the most incredible mama moments of my life, my temperature keeping his temperature even.

Right in front of me is this boy-almost man (who, I must say looked a LOT taller when he stood up out of the hospital bed). Right in front of me, my baby-boy-man, and I was standing there doing something, whatever I could do, to ease his suffering, and the tears, I could feel them coming to the surface.

Today has been a hard day, the second day after surgery always is harder than the first. Hard only in that he is feeling more pain and he’s having to do all the hard stuff, like MOVE, when what his body would actually like to do is be still. Hard for me, because I’m the mama.

We all know he has to do the hard stuff, I mean, it’s not like he hasn’t been in a hospital situation before, but that doesn’t make it any easier. However, he knows the routine and he’s got quite a strong spirit. He does not complain. He does not cry. And later, when Dr. Cho came in to check on him, asking, “How are you doing today?” Ben said, “Great!”

Oh! Haha…I wasn’t going to say that!

When I first arrived this morning [with Mark’s fried egg sandwich, our lunch in a cooler bag, my laptop, my knitting (which I have not touched), a novel about photography, a book of Rumi poetry, my sketchbook and pens, etc. etc. etc. (as if I am going to have a lot of free time)] I went straight to Ben’s bedside to do my job: hold his hand. He was resting after a difficult morning in which the above-mentioned nurses manhandled him after first opening an ice bag on his head, drenching him with ice water, and in which his catheter was removed. Ouch.

For a while I just sat with him, his cool hand in mine (one of my most important hospital jobs). I stared at the wall and watched his face as he rested peacefully. At some point he called Mark over to hold the pee bottle for him (one of Mark’s most important hospital jobs), and we all were quiet as we waited…and waited…and waited. (It takes time.)

“I love you guys,” he said into that quiet.

Mark and I looked at each other across his body. I think we were both feeling the love spilling over. It was such a vulnerable and tender expression of gratitude. And unexpected. My heart broke quite open.

In the days before this surgery I kept feeling him push me away and I knew that it was okay, that it had to do with self-protection. If you let Mama and her emotions in too close you might feel them too. In those days he actually really needs Dada and his self-contained, humor-laden, no-nonsense attitude. But when I show up at the hospital every morning, I see his IV-encrusted hand raised above the hospital bed rail, waving little waves at me as he says, “Mama” in a croaky little hospital voice. I spend most of my time there sitting by his bed, my love spreading into him through our hands.

My most important hospital job. Actually, my most important job…period.

The waiting

Okay, first I'll cut to the chase. Ben came through the surgery with flying colors, of course. Dr. Cho got very good correction, though not as much as he would have liked. We have seen the xrays (before and after) and we're very pleased.

So, you can exhale, okay?

This morning, as Ben was being prepped for surgery (vitals being taken, questions being asked by every tech and nurse and doctor available, it seemed), the anesthesiologist came by to introduce herself and ask Ben her list of questions. Do you take any medications? Do you play any sports? Do you have any pain?

When she was done with Ben, she asked Mark and me to join her in the hall. There she proceeded to run through the long list of possible catastrophes that could (but probably won’t) happen. Death. Paralysis. Blindness. BLINDNESS? I had never heard that one before. And it completely rattled me. “Are you okay, Mom?” she asked. Um. No. Not okay. Really NOT okay. Blindness? (Later, Mark said he’d heard that before, but I never had.) Mark explained to her that he’s a numbers guy. When he hears a statistic he goes with the 99%, but I, I go with that 1%. Because, and I’ve said it before, I’m sure, SOMEone is that 1%, why not me? It might be MY kid! “That’s a mother’s job,” she said and I have to agree. Not that it helped.

When we went back into the OR prep room Ben took one look at me and said, eyes narrowed, “What did she tell you?” “Oh, the usual,” we shrugged, holding it together as hard as we could. A moment later he was whisked away into the OR, looking worried, very worried. That boy knows all too well the feeling of handing your life over to the OR doctors. Here’s my life, yeah, put me to sleep. I trust you. Wait. While I’m asleep you’re going to cut me open?

We walked out into the hall. I turned right, away from the hustle and bustle of the nearby nurses’ station, turned a corner and burst into tears. I could hear Mark breathing very hard and slow, the kind of breathing you do to keep from breaking apart at the seams. And then we found each other and hugged.

No amount of practice makes saying goodbye to my child in the OR anteroom easier. But really it’s this surgery that is hard. This surgery just puts his others to shame it’s so big. We've done this so many times, I thought. And every time is so, so hard.

As we walked back to his room I tried wrapping my mind around that fact that it's the last time we're going to go through it. Not to tempt fate, but that seemed like a reassuring idea. I have to admit, I couldn't do it. I couldn't figure out what that even meant. 

We returned to Ben’s room (which is a very nice single occupancy room with a vestibule for a dedicated nurse, almost like an ICU room). We got out our phones. We posted to Facebook. We called a few people. Then I sent Mark to Starbucks for a chai latte for me. We both needed to act normal.

The waiting time during surgery is surreal. There is some relief that it’s finally started, especially when the prelude has dragged on. Though there is some relief in those moments that your child is first away, away in some distant place called the Operating Room, it’s only because your child is now undergoing that thing you have been dreading with all your heart and soul. You relax because it has begun, this thing that for so long hung before you, the ax waiting to fall.

Too melodramatic, you say? Well, I say not. My child was there, being laid open with a scalpel. My child was on that operating table being kept alive with machines…breathing for him and monitoring every vital sign he had. I say not too melodramatic because in fact, the truth of what was happening to him was so brutal that I can barely acknowledge it.

When the anesthesiologist told me all the horrible possibilities I barely heard them. How could I listen? When someone says that what they are going to do to your child could leave them dead, paralyzed or blind, how can you give your child over to them without total fear? You either have to live in that denial place for the moment or you have to change your mind. Um, nope. Thanks but no thanks. I changed my mind. You can’t have him. Sorry. Play that game with someone else’s baby.

Maybe someone’s done that, but I have to say, I haven’t. I have taken those possibilities and put them aside a bit. And then pretended like things were just normal for a bit. It’s all you can do.

The waiting was easier today because two dear friends came by, bringing us lunch and goodies. We chatted and laughed and had something to eat. Diane and Marion are two of my oldest friends, the first two girls I met when I was new in junior high. We had a great visit and then Dr. Cho was there, telling us of his success. It was over. Six and a half hours. Done.

 

I have so much more to tell you, but it will have to wait. It's time for this mama to go to bed.

Did I mention my heart is still pounding?

Another portrait of Ben, this one was a faux crime scene.

One afternoon seven years ago, in the middle of our brain surgery ordeal with Ben, Mark and I had the afternoon off. My mother-in-law, Joyce, urged us to go have a date while she stayed with Ben at the hospital. He was doing a bit better at that point, so we felt we could escape for a bit. It was hard to decide what we wanted to do on date nights in the best of times…that afternoon was a serious challenge. We finally chose a soak at a spa we liked on Piedmont Ave. and a movie. Woody Allen had made his comeback with Match Point at the time, so we decided to see that.

We were deep into our stay at Children’s Hospital then. Mark had been “sleeping” bedside nightly for close to 30 nights, I’m sure. But we still didn’t know when our time would end, we still had not exhaled.

The hot tub was good. We soaked, we chatted. And we were a little looser in the joints when we got to the movie theater.

And then.

I can’t remember if we’d read many reviews, but we liked Woody Allen so we thought, good choice. The movie is a thriller, tense, intense, full of foreshadowing and foreboding. Sounds distracting, right?

I hate that feeling of dark knowing. I can’t stand the train wreck coming. When I read a book with that kind of intensity, I often will skip ahead, read the scary part, and then go back and read through the whole awful scene, quickly. It’s a release, a way to deal with the high level of fear and expectation.

About half way through Match Point I was so incredibly uncomfortable, so anxious about the outcome, I could barely stay in my seat. But for some reason I did. Mark felt the same way. And yet we just sat there, paralyzed, unable to save ourselves from two hours of unneeded stress.

When we left the theater we shook our heads. What were we thinking? Really, could we have chosen a worse movie for two such war-weary parents to see on their one and only date during two months of hell? It was crazy. We came back to the hospital no better than when we had left it.

That afternoon popped into my head just now as I escaped upstairs to my office. Mark and Ben and I were watching Pulp Fiction on our big living room screen tonight. And I just couldn’t take it. It’s a cult classic, I know. Even though it’s been around for almost 20 years, I’ve never seen it. I haven’t avoided it, exactly, but I don’t go out of my way to see blood, gore and more. I wish I could have withstood the violence, only because we were watching together and it’s one of those movies everyone’s seen. I wanted to be a good sport, you know? However, after about an hour, through which I was distracting myself two-thirds of the time (on my iPhone or, literally, stuffing my fingers in my ears as hard as I could and squeezing my eyes shut just to get from one scene to the next),well, I finally threw in the towel and excused myself.

Ben, the sweetie, wanted to turn it off and watch something else. Really, how incredible is that? “I want us to watch together, Mom,” he said. But I insisted it was okay, it’s late, I’ll go upstairs and read.

The truth is I need a train wreck like I need another hole in my head. The truth is I need to be finding ways to relax as much as I possibly can. The truth is my breathing is so shallow these days I practically can’t find my breath anymore.

Even now, my heart is still racing.

Every time I think about next week my stomach lurches. I talk and talk and talk about what is happening and the anxiety doesn’t lessen, of course. In some ways it’s increasing just because every day that passes is one day closer.

I know that the worrying I’m doing now is not saving me from any worrying I will do then. I know that the worrying is not going to mean Ben feels less pain or I feel less distress. The worrying is just more pain and more distress and yet I can’t stop it.

In May, I took another course from Catherine Just (the wonderful Catherine Just) called the Deepening. One of the videos she shared with us was an interview she did with Rita Rivera Fox. The topic was connection, and what Rita said that really stayed with me was that when we feel discomfort (unhappiness, anger, etc.) rather than try to muffle it with food or a distraction, we can soothe it by greeting it and offering it our breath. “Oh, there you are, ah…” we say to it and then we breathe in and breathe out and…there’s a tension release, a pain release. I’ve done it so many times (not often enough) in the past few months and it’s really amazed me how well it works. When we feel pain our first instinct is to tense up, to hold our breath in, to deny the pain. But all that does is intensify it. Holding your muscles tight just makes that pain get bigger and harder. Greeting it, acknowledging it, connecting with it, and then breathing into it, lets it be free. And, then it transforms it.

I am connecting with my discomfort, oh yes. But I’m not breathing into it. I’m sitting in the dark, staring at it on the big screen, hearing the train coming down the tracks. I’m terrified.

I went to see Amy, my integrative health practitioner last week about my adrenals and my thyroid. Both have been giving me trouble for the past several years. It’s taking a long time to balance them, replenish them. No wonder, of course. That train really is screeching around the bend. It has been for eight years. Did I mention my heart is still pounding?

Amy told me that after this is over, and Ben is home, it’s going to be time then for me to put down all the things I need to do and should do and even some of the things I have to do. It’ll be time to put them down and then it'll be time for me to EXHALE. Exhale.

That felt so true. That felt like the truest thing I’ve heard in a long time. And I’m looking forward to that time.

Right now I’m going to go to bed (the movie just ended downstairs). And tomorrow I’m going to have a meet and greet session with my fears. It’s time for some release. And it's time for a practice exhale.

This is my boy

Ben 7.4.13

This is my boy.

This is my boy one week after surgery.

This is my boy one week after surgery, relaxed, laughing, beautiful as ever.


Ben got through Surgery #14 with flying colors. He opted to get his anesthesia with an IV rather than gas and had a much easier time snapping out of it post-op (his last few experiences with anesthesia were wrought with intense nausea in the days of recovery). Within a couple hours of returning to his hospital room, I was talking to him on the phone and he was saying things like, "I'm feeling AWESOME."

Now, having gone through surgery myself in the not so distant past, I can tell you that the word "awesome" in reference to how I was feeling probably wouldn't have occurred to me in, well, a month or maybe a year of said surgery.

But, my boy is different.

Clearly, he is accustomed to this crazy life he is living. Difficult though it is, he is familiar with the rollercoaster of feelings, both emotional and physical. With Mark right there by his side, and me on the other end of his phone, he feels protected. We are there to catch him, Mark physically, and me, emotionally. We are in almost constant contact.

He was highly motivated, as usual, to get himself up and out of the hospital as fast as possible. And did so, being discharged the next morning before lunch! By Sunday, and their flight back to Santa Rosa, he was off pain meds for most of the day and feeling great.

Before his surgery, Ben asked Dr. Cho if he could keep the rod that would be removed from his back. Dr. Cho said he'd see what he could do. It now hangs on his wall in a vacuum-sealed bag. It's his purple heart. Or his totem.

Dr. Cho told Ben that his spine is quite stiff and that means he's not sure how much correction he'll be able to attain in the upcoming fusion surgery. I haven't spoken with him, but I guess this is due to a combination of variables: his spinal vertebrae, the side-to-side curve, the forward curve, the rotation of his ribs, and the stiffness of his spinal cord. Ben took this as incentive to really work with his physical therapist on movement and flexibility there...as much as he is able...in the weeks ahead before the Big One. He will begin in just a few days.

This second to last surgery was almost more of an emotional hurdle than a physical one. Well, easy for me to say, I know. But the fact is that what lies before us is a huge surgery in comparison. Much longer, MUCH more intense from a surgical standpoint, much longer recovery...more pain.

Regardless, my boy is in such a positive place. He is at ease both in mind and body. And heart. I am the happy recipient of frequent spontaneous hugs, hand holding, and smiles. Such lovely energy. There is peace and wisdom and grace in it.

On Monday, the day after he returned from LA, I began a photography project for an online class I'm taking, In Plain Sight with Catherine Just. He agreed, before he left for LA, to be my subject daily for a month. And it was intentional for me...to choose this month between surgeries. I want to be very present with him during this time. And I want it to be a record.

The photo above is #4, the ones below are from the first three days. I have done this project once before, with Mark as my model, and it was an incredible experience. Already, in four days I have found it to be an avenue to express our connection more deeply and, in fact, to deepen our connection through the process of photographing him. It's not just me taking a picture of him. He is part of the process fully. He appreciates it, he shows up for it. For me it's a creative act, it's an act of love, it's an act of devotion.

Ben 7.1.13

Ben 7.2.13

Ben 7.3.13

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.

no matter how many times I go through this

No matter how many times I go through this, it does not seem to get easier. I can tell myself that he’ll be fine, I can tell myself that it’s a minor surgery. I see him even push me away this time saying, “Mom! Don’t make such a big deal out of this.” And yet.

Wednesday I lay curled on the bed, sobbing. Doing just the most mundane tasks, driving Toby to Hebrew school and making dinner, seemed out of my reach. The last possible thing I could imagine doing. I listened to my favorite Jewish music and I reread my last blog post and I sobbed. Wednesday was the day before surgery.

Despite that emotional day, I couldn’t get to sleep that night. Knowing I’d be up in a few hours to “talk” to Ben as he taxied to the hospital, made it hard to relax. At 3 am my cell phone alarm roused me from a dose. It was 6 am in Philly and I texted Ben as he and Mark made their way through the dark early morning streets to the hospital.

This time around our textversation was not nearly as involved as other times. Ben was much more removed emotionally in the weeks, days and minutes leading up to this surgery. Perhaps it’s his age (almost 15) or just the sheer number of times he’s gone through this, or maybe it’s the fact that Shriners does a good job of making sure he doesn’t have a harrowing experience in their hands. Or maybe it’s his state of denial working overtime, and being with a dad who is just so steady state…I’m the one who worries, not Mark. Whatever it was, he did not spend any energy on worry this time around. And, though I don’t want him to be someone who buries his feelings, I ask you, what is the point of worrying?

This time around Ben arrived at the hospital, the waiting area for the OR and probably even the OR itself without anxiety. He was so calm that he didn’t need me for moral support. Our textversation was fairly light, fairly sporadic between 3 am and 4:30 am when they wheeled him away and texted our last goodbyes for the time being. I turned off my phone and fell into fitful sleep, waking only briefly a couple hours later when Mark texted me to tell me Ben was out of surgery and on his way to the recovery room.

Twelve hours later they were in a taxi on their way back to the hotel. Ben’s had a harder time with the after-effects of the anesthesia this time around. Headaches and vomiting. Unusual for him. But other than that he doesn’t have any pain or discomfort. And tomorrow the dynamic duo will board a plane bound for home. Halleluyah!

No matter how many times I go through this, I don’t seem to have good recall. Day before you’ll be feeling quite anxious. Day of you’ll be exhausted. Day after you’ll be fighting off depression. If I took the time to look back over my blog posts I’d remember each step, but I don’t so here I am writing another post about how depressed I am today, the day after the surgery, when I should be happy he’s doing so well. Instead I’m hung over with the day after blues. All that energy focused on making it through the surgery then seems to filter into a dark gray cloud overhead holding just a boundariless ennui. No energy for anything. No spirit. No lightness of being. And every single time I am reminded again how I hate being across the country from my baby. I can’t even say “when he’s in pain” but I can say when I should be tending to him. Not having him near but knowing he needs some amount of tending to drives me to the brink of...of what? Anxiety? Insanity? Panic? No, no, no. Frustration. Twitchy unfocused frustration.

We have not heard from the surgeon yet about the correction achieved. Mark said it looked good when Ben went for xrays. We shall see. Until then, we shall just be where we are: on the other side of surgery #11.

 * * * * * * * *

I write this to share my story, but I write this to process my story, too. I leave a trail of words, so that I can better understand my journey and so that, coming upon it in the future, my children will better understand our journey. And you, fair reader, also participate, because the words you leave me at the end, if you do, buoy me, comfort me, and tell me that my words are universal words.Thank you!

Mark and Ben

Ben gets ready for a poker game in the Children's Hospital PICU with Cousin Yosef, Daddy, and Uncle Barrett. The game went late but the nurses were so happy to see Ben happy that they let the guys stay one hour past Visiting hours. March 2006.

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” ~Lao Tzu

Ben and Mark went off to Philly again today. Thursday he’ll undergo his 11^th surgery.

Sigh.

This is a minor surgery. This is a lengthening of the 17” titanium rod nestled in Ben’s back. In May, at his last lengthening, Dr. Cahill thought he hadn’t gotten much adjustment, but surprisingly achieved a 16 degree correction. In the time intervening, Ben's spine went right back to where it had been, about 55 degrees. Who knows what will happen this time? But, both Ben and I have a feeling this is the last lengthening and the next surgery will be the Big One. Fusion.

More on that later.

What I really want to tell you about is Mark and Ben.

In 2006, Ben, age 8, went into Children’s Hospital, Oakland for brain surgery and Mark insisted that he would be the parent at bedside. It was only going to be a week. I would stay at my mom's house about five minutes from the hospital. Little did we know what that would mean long term. 

What does it take to be that parent, the Hospital Parent? Mark holds his feelings in (which has it’s downsides, but in the hospital isn’t such a bad thing), can wake up and go back to sleep easily, isn’t squeamish, is good with technology, and stands his ground. He won the round. He was the best choice for HP.

As Ben’s one surgery turned into four and his one week in the hospital turned into two months, Mark learned to sleep in a hospital, which is not so different from a war zone. He spent 40 days and 40 nights at Ben’s bedside at CHO. He slept cramped onto the most uncomfortable chair bed. He was at Ben’s side during terrifying and painful nighttime procedures, he was there to chase away nurses who were insistent on bothering Ben. He was there to notify them when the IV bag seemed to have a different antibiotic in it than before…and yep, he was there when they hurriedly changed said bag for the right one. When Ben's monitors would beep and wake them up, Mark could fix that beep, he could figure out a malfunctioning monitor faster than the nurse could get there from her station. When Ben was confined to his bed and had to "go" Mark would hold the pee bottle. Together they watched ridiculously inappropriate TV (Family Guy and the Simpsons and Blazing Saddles). But most importantly, he was there, without fail, for his son in the hardest of all times we could imagine.

Ben is incredibly lucky. All of our boys are, of course. Mark is an amazing father. He is reliable and loyal and honest and generous. He’s also hilarious, brilliant, and loving. He’s responsible and dependable and clever, too. And he’s unfailing the best dad and husband I know. Yes, we are all lucky to have him.

But from one surgery to the next he has forged a connection with Ben that is unique to the two of them. Because of the difficult path Ben has to walk in his life, Mark has had the occasion to sleep at bedside many more nights at Shriners Hospital in Philadelphia, where Ben is treated for scoliosis. (You can read about it here, here, here, here and here.) He also is there with him in the hotel, where Ben recovers before returning home. The beds are without question more comfortable and the bathroom more luxurious at the Ritz. But the work is essentially the same: care unhesitatingly for his child who is in pain…again.

Years ago, after Ben had done something (now hilarious in retrospect) out of line (run away to a neighbors backyard to jump on their trampoline or cut his hair to the quick or escaped from the house to toddle down to the major busy street, you know, something like that!) Mark called his mom to tell her, “Mom, I just want you to know Ben is my payback.” She reportedly laughed for ten minutes at that. Mark was not the easiest child. His basic rule of thumb was: “Don’t ask. If you ask they’ll say no. Just do it.” And yes, that is exactly how Ben thinks.

Ben and Mark are both pragmatic. They are strategic. They have sophisticated, sarcastic senses of humor, but are also moved by stories of compassion and kindness. Lest you think Ben is hard-nosed, you should know that he loves young children and animals, is, in fact, a magnet for both. Mark is one of the few men I’ve ever known who loves babies. He loves holding them, changing diapers, cuddling them. He even loved waking in the night to hand them to me for a feeding. He was never impatient for our own babies to grow up. He would have breastfed them, if he could.

For the past seven years Mark has demonstrated one aspect of his devotion to his family by being the Hospital Parent. He holds that safe space for Ben keeping the storm at bay. Mark is there for Ben like an anchor. No matter how violent the wind and waves, Mark is security. You will not float away. You will survive this.

The first time they traveled without me I was beyond anxious. It was the first time I had not been at Ben’s side when he was wheeled into the OR. It was the first time I wasn’t with my baby as he headed into another life-or-death experience. The night before that surgery Ben called me from Philly. “Mama,” he said in a voice that sounded much younger than his 12 years. “You have to come be with me. You have to get on a plane right now and fly here so that you can be with me in the morning. I can’t do this without you.” That call chilled me. What could I do? I looked at Harry and Toby, their faces pulled with worry over their brother. Technically, I couldn’t fly there anyways, it was too late. But honestly, I couldn’t leave my other boys one more time, either.

When Ben returned from that trip he said he never wanted to do that again, travel for surgery without his mama. But, by the time the next one rolled around, he couldn’t imagine going through a surgery without Mark at his side. We can’t afford financially for both parents to go, and we can’t afford emotionally either. Someone needs to stay home with Toby and Harry. A choice needs to be made. Bring Mama who will potentially faint at the sight of an exposed surgical wound? Bring Mama who wears her emotion out in front, cries easily and…is your mama…making it possible for you to cry easily, too? Nope, better to bring Dad, the guy with all those hospital bedside skills and who keeps the mushy stuff tucked down deep inside.

Ben and Mark now have their routine, their rituals for their time in Philly. On the way to the airport they stop in Chinatown for dim sum take out to devour on the plane. While in Philly they visit Reading Terminal Market more than once for pulled pork sandwiches or Thai food or other streetfood delicacies. They watch Comedy Central, all the raunchy stuff I’d never stomach, they both love. And now, since Mark is Ben’s math tutor, they’ll work on Algebra and Biology homework as well. (Is that a downside...taking your tutor with you?)

If you saw them on the way to Philly, you’d never know they were heading to another surgery. They’re two peas in a pod. They're both flirting with the cute babies on the plane.They’re laughing and joking and side by side playing games on their phones or iPods.  Ben has grown up with Mark during these trips. Their bond is obvious.

Mark had a very strong tie with his own dad. It was not complicated or overly emotional. Mark didn’t question it, their connection was a given. Many of Mark’s incredible qualities as a father and husband are behaviors he learned from watching his dad, and some, like with Mark and Ben, seem to just be innate character traits. And that love of babies? That's something Grandpa Norman passed to his son and grandson. Such a lovely trait in a man.

What Ben and Mark have is so deep and so critical. Mark has gone to the cliff with Ben now so many times that Ben has known repeatedly the raw love Mark has for him. Ben’s most important role model has shown him unswervingly what commitment is, what love is, what a father does for his child. It is a powerful gift. And I know this: it will carry Ben through life.

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.