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.

Ingredients for healing

Yesterday Ben and I drove into LA for his two-week post op visit with Dr. Cho. Twelve days since his spine was fused with two long titanium rods and 20 3” long titanium screws (and a few hooks thrown in for good measure). Yes, just 12 days since he became the owner of a 16" scar down his back.

 

And yet this boy was able to get in and out of the front seat of the car with ease. This boy traveled pain-free to and from the hospital, walked without assistance of any kind. Yes, this boy was doing so well, he even got on my case when I was overprotective (hey, I’m entitled).

 

Dr. Cho came into our examining room with an ear to ear grin. He had been on a vacation for the last part of our hospital stay so he’d had only reports (from his interns) to go on since he left. But what he’d heard was that Ben was a rock star: strong, healing fast, moving with confidence, low pain. AMAZING. Dr. Cho told us that Ben had bounced back faster, stronger and better than any fusion patient he’d ever seen. He’d blown away said interns. His pride and delight in Ben showed on his face.

He wanted to know our secret. What I told him was physical therapy. Ben’s been going to physical therapy for the past few years and it made a noticeable difference in his recovery from his surgeries right from the start. My belief is that, for kids who have repeat surgeries and limitations to be fully physical in their lives, physical therapy gives them a way to have a strong core, muscle flexibility and strength, and a positive self-concept. I am strong. I can do this. When you’re a kid going in and out of surgeries, like Ben was, well, then those kinds of messages can do wonders for the brain and the body.

Dr. Cho was impressed. “I think I may have to start prescribing that for my patients,” he said. “I think there’s a research paper in there.”

What I didn’t mention to Dr. Cho were some other ingredients in Ben’s success which have occurred to me only now.  

There's meditation. He's been meditating for the past couple years and I know he was meditating in the hospital, post op, blowing the physical therapist away when he told her that.

And there's his sense of humor. Ben told me he was cracking jokes with the doctors as they wheeled him into the OR, indeed continued to crack them up with stories as they were starting to put him under. That is some kind of grace under pressure, right?

But the biggest things have got to be the huge love and support from family and friends. I’ve told you of our hand-holding. I’ve told you about Ben and Mark and their amazing connection. But, I truly can’t emphasize enough how every microsecond of attention that we’ve been there for our boy has made a difference for him. Every spontaneous hug, every hand-holding moment, every incredible conversation I've had with him during these quiet days of rest and recuperation have been healing blessings for Ben (and for me, as well). Lack of stress = opportunity to heal. We were truly changed by this unfettered space and time for him and with him.

An example of the screws in Ben's spine.

Last night, after the hospital visit, we were talking about some folks we know who have no contact with their parents. Ben reached out for my hand (he still is wanting my hand to hold) and our eyes met. "Can you imagine that?" I said. "Only talking to each other once a year or never?" Ben, eyes very wide, very very wide, looked straight at me and shook his head slowly. "I don’t ever want to have a time like that with you, Mama," he said.

We have been so lucky to have been surrounded by love and compassion, so that we could give Ben exactly what he needed: Us. While we’ve been here in LA we have experienced the grace of loving kindness from strangers and family members and friends from many years gone by. The loving embrace and care of these people has made all the difference for us, made it so we could have the space (emotionally, physically, financially) to be right there for Ben as long as he needs us, made it so we can not worry about anything but healing and moving forward.

More to come with a gratitude list tomorrow morning, before we head for home.

Exhaustion

We packed up all of our things and left the hospital yesterday afternoon. I had anticipated hugs with nurses and waving a parade wave down the hall as we departed, this seemed like such a momentous occasion beforehand. But, in the moment it was lacking in fanfare. Ben’s nurse Naomi (who had tended to him back in November last year when he was there for emergency surgery) was nowhere to be seen, the halls were fairly empty and quiet.

We pushed Ben part of the way in a wheelchair stacked with extra pillows but when we got to the elevator he stood up and started pacing, perhaps to alleviate some nerve pain he’s been feeling in his left thigh, perhaps to alleviate some nerves. Four elderly gentlemen in white Shriners uniforms were seated in chairs under the windows between the elevator and the registration desk. (They are the drivers, Shriners members who donate their time to pick up and drop off Shriners patients at their homes in and around LA and beyond. The dad I mentioned in my previous post said they’d come all the way to Las Vegas to pick them up and bring them to the hospital for their son’s appointments and surgeries.) I wanted to take a picture of Ben with them, but he refused. Not in a picture-taking mood, of course. But I really was wanting to document this crossing of the threshold. Last Moments in the hospital for Last Surgery.

Getting Ben into the car was a complex procedure since he has strict rules to not bend, twist or lift for the next six weeks. Try getting into a car without bending your head and neck down or swiveling your torso around. It’s quite challenging. First we opened the doors and he assessed the situation. Then he sat down, a bit of his tush on the edge of the seat, and shortly found that his head could not go straight back into the car. At all. I had visions (panicked) of sending him back up to his room to wait while Mark drove the car back to the rental agency to trade it in for an SUV with a taller doorframe.

Ultimately, he decided to try for the backseat and, lo and behold, was able to manage that. We settled him in, packed the last things into the trunk, buckled up and off we went. I made Mark drive, he’s more careful and slow in general about driving than I, but also because I had an enormous anxiety that I would get us into some kind of accident and Ben would never forgive me.

The trip to my aunt and uncle’s place in Calabasas was easy and smooth. Ben extricated himself bravely from the backseat and headed for a bed where he could relax.

I think it was just about then the exhaustion set in.

I had not had a good night’s sleep the night before. Or the night before that. Or before that. Not that it wasn’t comfortable where I was staying (more on that in an upcoming post). But, let’s face it, restful sleep is not something that comes to me easily in the best of times, let alone when we are heading into a surgery or going through one.

But this exhaustion was bigger. It felt like a monster. I felt like I needed to sleep for a year to recover. And every time I looked over at Mark he was yawning. I was not alone in this.

Ben was comfortably unfolded on my aunt and uncle’s Tempurpedic adjustable bed, tapping away on his phone, then playing Xbox. I retired to my room, kicked off my shoes, and lay down to rest.

My heart started pumping, hard, fast.

I remembered to breathe. I noted my poor, anxious heart. I closed my eyes.

I tried to surrender to my exhaustion. I tried to, but it was nearly impossible. I had big gratitude for where we were, on the other side of the surgery, at a peaceful and loving haven. I breathed in the beautiful quiet, the house plants, the light, the colors and the comfortable bed I was laying upon. No go.

I took a stroll and found another spot to rest, on a chaise longue next to the pool. I leaned back on soft white towels laid out as if it was a posh hotel, and felt the warmth of the Southern California summer day envelope me. I closed my eyes again, trying to just rest and relax into the moment. I listened to the birds. I breathed some more. Despite all this, it was not easy.

There have been years of build up to this exhaustion. From the first brain surgery over seven years ago, to today, I have been holding myself together to manage to survive. I have been holding my breath, crossing my fingers and toes, praying, meditating, planning, and researching. I don’t look like a wreck from the outside, and in some ways I don’t feel like it on the inside. But in this moment, when I measure the full volume of my exhaustion, then I know the toll it’s taken on me.

We had a lovely dinner with my aunt, uncle and cousin, who came by to see Ben. And we went to bed on the early side, for us. Within a couple hours my phone was beeping, and in the dark I read a text from Ben, informing me that he had something bothering him, a pain in his eye.

I went into his room, and he was writhing and moaning. His eye was in excruciating pain and, when I looked at it with a flashlight, I saw it was very red and maybe there was some bump on the inside of his upper eyelid. I gave him eye drops and considered that in the morning we would somehow have to take him to an eye doctor or convince our family doctor back home to prescribe something over the phone. The thought of folding him back into the car was enough to set my heart to racing again.

I gave him his pain meds, more eye drops, and a cold compress on his eyes. He and I decided I should sleep with him (I gave Mark a break and let him have a much deserved night of nearly uninterrupted sleep) and so I moved my pillows in and got in next to him. I held his hand and he fell asleep quickly. I relaxed a bit and then forced myself to surrender, again, to the moment. The moment of deep night, darkness, and no answer to hold on to. I breathed in and out with intention. I relaxed my muscles and thought to myself: You cannot solve this now and so you must sleep.

Today he awoke with back pain but no eye pain. Today we will rest and then rest some more.

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.

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.

Racing, Racing Heart

...from my art journal...

Lately I’ve been dealing with a racing heart. Racing and racing and going nowhere. We can chase down the reason for this metabolically and we’d find that my adrenal glands are pooped out, despite my (and my health practitioner’s) best efforts to support them, help them, care for them. I’m not done figuring out what they need, and I must continue to live with the racing until it resolves.

But tonight I lay in bed and noticed that my heart pounded on and on, my mind wandered through a vast territory of thoughts and musings, some anxiety-provoking, but not all. I can be the best perseverator around. I can find something good to chew on that will only get me worked up and I did and then abandoned it for something else and then found another thought to chew on.

I switched positions. I rolled over and adjusted the twelve pillows I use to prop up my body parts. I noticed the pain that is almost always present these days in my right hip. I tried not to perseverate on that for too long.

And finally, the thought that’d woken me up, I’m sure of it, that had been working its way to the surface of my consciousness bobbed up and once it got there I was wide awake. There was nothing more to do. No denying it.

In just about a week we will go to see Ben’s surgeon at Shriners Los Angeles and we will discuss the next steps in his scoliosis/kyphosis treatment and I will have to face (and he will have to face) what that will be.

Ben was diagnosed with scoliosis when he was eight years old. He had a sudden onset, as far as we could tell, and that suddenness sent us scurrying to the radiologist to get x-rays and then an MRI and at that point we found ourselves dealing with other issues, immediate brain surgery, and all that followed. After the trauma of that, (four surgeries instead of one, 40 nights in the hospital instead of six) the last thing we wanted to do was spend more time in a doctor’s office so, to be perfectly frank, we pretended that the scoliosis wasn’t an issue and just tried to recover. This was something we all had to do, not just Ben, but of course, mostly Ben. And as his mom, I really didn’t feel like pushing it. Covering it up, patting that knowledge of the lurking scoliosis on its ugly head, and saying, “Shhhh, shhhh…” was what I’ll now admit I did.

So it was that three years later at his check up with his neurosurgeon at Oakland Children’s Hospital we heard, “I think we should get an x-ray of Ben’s spine.” And hence we found that his curve had not righted itself (a quasi-miracle which sometimes occurs after Ben’s kind of brain surgery) but, in fact, had worsened from 27 degrees to 35. We were sent to the orthopedic clinic soon after and told that Ben needed to be put in a brace for 22 hours a day for the rest of his childhood (he was 11) or until his curve reached 50 degrees at which point he would need to have his spine fused.

We walked out the door and RAN to the internet to find out what we could do that wouldn’t entail coercing our most belligerent, obstinate, stubborn, and already medically traumatized child into wearing a hard plastic shell round the clock for the next eight years. We had already done the research on bracing and knew that its results were likely to be nil. For children who had curves of 35 degrees before age 11 there was a 98 percent chance of reaching 50 degrees before their spines were fully grown. That was our reality.

We found a lot of scary things, a lot of treatments that sounded pretty sketchy, and then, thanks to a dear friend who loves to do medical research on the internet, we found Shriners Hospital in Philadelphia where their Chief of Staff was experimenting with several different methods of halting and slowing down the progression of scoliosis in children like Ben. A trip to Philly a few months later and Ben was officially their patient.

Here’s what we signed on for initially: Vertebral Body Stapling. A one-time surgery to have staples implanted in his spine to pull together into straightness the offending vertebrae where his curve was greatest. The staples would act as an internal brace and thus he wouldn’t need the ineffective external brace (which one orthopedic surgeon we talked to in San Francisco admitted was a medieval torture device). This sounded like a good trade off. It had good results, although it was still quite experimental. We joined an online support group for parents of VBS patients at Shriners and got lots of great information.

But by the time Ben’s surgery rolled around (nine months later…we had tried other non-invasive techniques in the interim AND he had worn a brace for part of that time) his curve had progressed and their research data was showing that curves as severe as Ben’s needed more support than just the staples. He was now scheduled for staples and a hybrid rod which would be hooked onto his lower spinal vertebrae and his rib cage and would need adjusting (for his growth) every 6-9 months.

The thought of this was frightening; the reality of this was harrowing. For the past three years Ben has had to undergo surgery twice a year, in Philadelphia. This means he has constantly been heading into a surgery, recovering from a surgery, or been living in the few months of limbo between those two states. He’s been going to physical therapy twice a week for two years. He’s traveled to Philadelphia seven times.

But you know all this (if you’ve been reading this blog).  

Our original goal was twofold. First, we wanted to give Ben’s spine time to grow, to reach its potential. Compared to Harry, Ben was tiny, and he had so much growth left to go in his spine. Stunting this growth with fusion would have impacted his organs and their potential growth as well. Second, we wanted to maintain flexibility in his spine as much as possible. That’s the beauty of VBS, which was one of the main reasons we loved it as a solution. Fusion will likely mean 12 of 24 vertebrae will be fused into one long bone…flexible? Not so much.

What I really want you to understand is that as much as I’d like to think of this next step as “OH, THANK GOD WE ARE FINALLY DONE with all this surgery and travel and antibiotics and pain killers and heading into and out of surgeries,” the truth is that I am TERRIFIED about this next step. TERRIFIED about its implications for the rest of Ben’s life. TERRIFIED that we’ve used up his nine lives. TERRIFIED of seeing him in pain, tremendous horrendous pain again.

And mostly terrified that just as he is emerging into his real, core, physical self again we will be sending him careening into a wall of suffering and immobility. A spine fused more than half of its course, with such limited flexibility that he will forever need to bend at the knee and hip to pick up something he’s dropped on the floor.

As much as I am glad he won’t have surgeries hanging over his head anymore, the thought of putting him through another major surgery, his third 10 hour surgery in his life, makes my heart race. Makes my adrenal glands pump out just a bit more adrenaline.

I have friends, from that original VBS parent support list, whose kids had the same exact surgeries Ben had, the staples and the rod, the adjustments, too. And their kids ended up with fusion earlier than we did, their kids are already past the one year recovery mark. They know what I’m going through, and what Ben will go through, and they also know their kids are fine now. Yes, they still have pain and it’s not a perfect solution, but you can live with it.

And maybe I’m just making a bit too much of all this, maybe I’m being a bit too much of a drama queen about it. Ben’s had time to grow. His spine has probably reached about 90 percent of its growth potential now. He didn’t have to wear the medieval torture device for the past three years. He will ultimately get to be a physical person again, with time.

I’ll know more in a week. But for now I am venting, and racing, and panting. No surprise then as to why my adrenal glands are so tired. It’s been a long race. And it’s not over yet.

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.