Thursday, August 29, 2013

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.

Wednesday, August 28, 2013

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.

Friday, August 23, 2013



“Inspiration is wonderful when it happens, but the writer must develop an approach for the rest of the time... The wait is simply too long.” 
–Leonard Bernstein

Ben is a healing superstar. He is so incredibly strong. Good spirited, sweet. I can’t get over how well he looks, how smoothly he moves, how charming he is in this hardest of hard situations. We had a whole crowd of cousins come over for a visit last night (several teens in that crowd) and he sat with them for hours eating pizza, laughing, joking around. I checked in with him a few times, knowing that he would not like to concede to exhaustion or pain, but might, in fact, be suffering. I ushered them into the house after a few hours (the longest he’d sat in a chair, indeed the longest he’d been upright since the surgery) and suggested he lie down on the comfy bed in my aunt and uncle’s bedroom, while the other kids lounge and chat with him there. Even when they left at 10pm he didn’t look worn out. Happy visits are good medicine. But he did sleep for 13 hours straight afterwards. That’s good for healing, too.

Sarah, Marissa, Ben and Corinne yak it up. Too much fun!
And for me, seeing their moms, my beloved Julie and Jody, was wonderful.

I’ve been wondering what I will write about now that Ben is done with his stream of surgeries. He suggested to me, when he overheard me saying this exact thing to my friend Barbara on the phone today, that he could contract a new disease. I think not.

What is the Muse? What is the urge to write? All those artists whose angst gripped them until they spilled their paints on canvas or wrote the lyrics to their heart-wrenching tunes…what is it about art and pain that flows together so well?

I can say that I just am someone who processes my troubles in words. Whether it’s on my blog or in a poem or in one of my messy art journals, words are spilling from me when I am full of worry or sadness or shame. I’ve definitely noticed, and you may have as well, that this blog is a little quiet in the in between times. When Ben is out of the hospital, or healing at home, in the past few years I haven’t spent much time writing here. Part of that is definitely due to time. When he is in the hospital or recovering I am closer to him, to home, to my computer. It’s also due to my need for emotional release.

A huge part of my experience on the blog is sharing my story with you, Dear Reader. Over the years, the feedback I’ve gotten in comments and private emails and likes or notes on Facebook have really warmed my soul. I love that I can touch your heart with my words. I don’t intend to move people to tears, but I know I do. And part of that is just Ben’s story in the raw. What could be more soul-wrenching than that kid’s story? But I also know it’s how I tell it.

That brings me to something I’ve been thinking about for a long while: publishing this story in a book. Over the years, many folks have suggested that I do that, but I haven’t felt that the story had a conclusion and without a conclusion I didn’t feel like I had a whole tale to tell. Now, with this last step taken I can see we are emerging from the tunnel and now feels like a natural time to wrap it up. I’m not sure if I’ll be looking for an agent and publishing the traditional way or choosing to self-publish. That’s a whole world I have only considered (with some trepidation, I’ll admit) from afar. It’s completely intimidating, honestly, to think about.

I plan to keep writing here but I’m really not sure what I’ll be writing about. This and that seems too fluffy, homeschooling feels like yesterday’s news, crafting and other pastimes are done and overdone all over the blogosphere. I need to figure out what moves the words out of me…and I suppose I will need to “develop an approach for the rest of the time.”

Wednesday, August 21, 2013


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.

Monday, August 19, 2013


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 d├ęcor, 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."

*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.

Sunday, August 18, 2013


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.

Saturday, August 17, 2013

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.

Friday, August 16, 2013

In this moment

I am typing with my left hand.
I am holding Ben’s cool, soft hand in my right.
I am sitting next to his hospital bed, it is fairly quiet in here.
I am mesmerized by the monotonous beeps and colored patterns on his monitors.
I am watching the rise and fall of his belly as he breathes.
I am remembering his smile and good humor this morning when I first arrived.
I am noticing the toll one day has taken on his state of being, how tired he now is, though all he has done is rest. Well, that and recover from his surgery.
I am remembering to breathe deeply myself.
I am watching the shadows lengthen on the walls.
I am noticing the pain in my lower back from sitting so long in this uncomfortable chair.
I am hearing the sounds of approaching nurses.
I am feeling my heart rate increase as I start to envision Ben being helped up to sit on the edge of his bed, erect, fearful, in pain, using a spine that was so recently deconstructed and reconstructed.
I am breathing again.
I am tasting a sourness in my mouth.
I am feeling the tiredness of my eyes.
I am buckling myself into this rollercoaster, reminding myself that this is the ride, this is just the beginning of the ride.
I am on alert as the door opens and the physical therapist enters, all smiles and tan and energy.
I am not breathing as she explains to Ben what they are going to do, sit up, maybe even stand up.
I am not breathing as she and the nurse unhook almost every tube and line and cuff from his body.
I am looking for where to stand, where to sit, to get out of the way but also to support myself, in case I feel like fainting, because I sometimes do, and it’s moments like these that bring it on.
I am leaning on the wall, on the chair.
I am sitting down.
I am tapping my fingers on my thumbs, my technique for managing these moments.
I am breathing.
I am watching them shift his body with the sheet.
I am not breathing.
I am watching as she gently and strongly helps lift him into sitting on the edge of the bed, arm under his bent knees, arm behind his shoulders.
I am afraid it will hurt.
I am afraid for him, and for me.
I am watching as his hospital gown slips away and
I am seeing his new scar, twelve inches or so, from top to bottom, shoulder to lower back, covered in mustard colored sterile tape.
I am seeing his new incision for the first time.
I am holding my breath as he wavers.
I am watching his face, from behind.
I am not standing in front of him because I am afraid I will fall.
I am afraid he will fall.
I am afraid I will faint.
I am afraid he will faint.
I am afraid of the pain and I am afraid he is afraid of the pain.
I am watching as they settle him back down on the bed, he is a little dizzy, he is a little nauseous.
I am watching as they move his arms up and down to get the blood flowing back up to his head.
I am breathing again.
I am surprised when he says he is ready to try again.
I am looking in Mark’s eyes which seem to be filling with tears, our boy is so, so brave.
I am holding my breath again as they help him up.
I am amazed again as he sits, supported by his old/new spine, this time for longer, this time with more strength.
I am watching for his pain, alert to his discomfort.
I am holding my breath and staring at his back, his straighter, flatter back.
I am releasing my breath as he says he is done, his voice strong.
I am releasing my breath.
I am breathing in deeply.
I am in this moment.

Thursday, August 15, 2013

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.

Wednesday, August 14, 2013

On our way to the other side

And so the journey to the other side begins.

It occurred to me the other night as I packed and repacked my suitcase for our trip to Los Angeles. This is our last (God willing) hospital trip. This activity that we’ve had to engage in over and over these past seven years is ending. No more preparing for surgery, not physically or emotionally.

What will that be like?

A couple days ago, I gathered with some of my Jewish women friends and we sang and meditated and they bestowed beautiful blessings of strength and presence and awareness on me. As I climbed into my car Barbara said, “See you on the other side.” That made me pause.

The other side. The other side.

This side I have been on has been fodder for my writer’s heart, no question. Angst and sorrow certainly does seem to call in the Muse. Ask any country music singer. Ask any artist. Ask van Gogh. And in this part of the journey I am sure I’ll have plenty to write about.

But afterwards? I spoke to a friend who I met years ago on a support forum for parents of kids seeking scoliosis treatment at Shriners. Her son went through the same stapling and hybrid rod adjustment surgeries as Ben, at the same time as Ben, but two years ago his spine just was curving too aggressively, so he underwent fusion then, at age 12. She told me that she barely could remember the time before fusion. Things are going well now, and those days of going in and out of surgeries like walking through a revolving door, well, all of that is just a distant memory.

So, of course, that sounds good and it’s so hard to imagine, as well. Like imagining you’ll meet your handsome prince when you’re out on date after date with frogs.

How do we define ourselves now and how will we define ourselves after, on the other side? Who will we be then and there?

Especially for Ben, this time will be transformative in more ways than one and certainly in more ways than just physically. But physically first, he will be a couple inches taller (straightening out a side-to-side curve, a rib rotation will do that to a body) and less self-conscious about his posture (something he shared with me today). In fact, he’ll have the best posture around…whether he likes it or not! Emotionally, it’s a different story. This is the end of so many years of hesitant living. An exhaustion (that is also physical) hangs over all of us, and I don’t even think we realize how heavy it truly is. So as that lifts and we feel lighter and lighter with no surgeries down the pike, well, I can only think it should mean we will feel more and more free. But, especially Ben. And perhaps less and less different from everyone he knows.

I am struck by Ben’s grace throughout this whole ordeal. (And by “whole” I mean, this surgery, this year’s several surgeries, these past four years…his whole story.) Today, the day before surgery, was challenging and yet Ben was fine through it all. I noticed how sweet he was with the nurses at Shriners, even when they kept us waiting and waiting, sent us home and coming back for a messed up appointment time. Even though it all worked out in the end, I found myself telling and retelling the story of our waiting to whomever would listen. At one point, after I rehashed it with the nurse at the clinic desk, Ben said, “Thank you! Bye!” over his shoulder as we headed to the elevator.  “Mom,” he hissed at me, “You shouldn’t be complaining to the nurses. They have so much crap to deal with every day.” Word.

He heard me telling it again, though, to Mark and I heard him mutter, “I put that down hours ago, when will you?”

Later he chastised me for jaywalking. “It’s not as if there aren’t crosswalks all over the place!”

He put my hand back on the steering wheel when I patted his knee, lovingly, as we drove home from our appointment. “Keep both hands on the wheel, please!”

“I didn’t know you had such a penchant for justice,” I said.

I am listening and learning from my boy. He is definitely my teacher.

At some point today, after the appointment with his surgeon in which we went over every detail of the surgery, every gory detail, with a fine toothed comb, I noticed he was a little quiet and asked how he was doing. “You know, I was just thinking about that,” he said. “When Dr. Cho talked about the [urinary] catheter I noticed my arms started shaking. Now I’m not sure if I’ve just been in a state of denial or acceptance.”

“Maybe it’s both,” I suggested.

“How can it be both? They’re the antithesis of each other!”

Maybe not. I see them as easily coexisting for him. One part denial, one part acceptance. It’s like just enough of each to maintain equilibrium. Until the doctor starts talking about catheters. And then it gets all too real.

And life is like that. Equal parts light and dark.

Tonight on the precipice of the Other Side, I am feeling how I've been, who I've been on this side for these many long years of surgeries. Being Ben's mom has definitely defined me in some ways, and being his mom is a huge honor. And a learning experience. When I consider it this way then it feels that I will just continue on the same...honoring my son, being awed by him, loving that I am his mom.

I'm ready to say goodbye to this chapter. It's definitely time.

And, it’s also time for bed. Ben has unplugged his Xbox, is getting ready to call it a day. Tomorrow we rise bright and early and head to the hospital by 7 am. I will attempt to write and post while he's in surgery, or at least when I get back to my digs. I have more to tell you. But it’ll have to wait.

Think good thoughts.

Friday, August 9, 2013

Cut to the chase

This was the scene yesterday at the foot of our driveway. Filled with foreboding or just your average foggy summer scene?

The day after the Pulp Fiction bomb Ben asked me if I’ve ever liked thrillers or action movies. I have, but not the blood and gore kind. Not the shoot ‘em up and hack ‘em up kind. And, based on my experience with that Woody Allen movie, not even the psychological thriller kind.

I told him that as soon as I got pregnant with Harry I felt so much more vulnerable than I’d ever felt before. The line between the cruel, cruel world and the safety of my child was just too, too thin. I haven’t been able to tolerate that kind of brutality since. I’ve felt like the act of watching those kinds of movies (and listening to the video games that my boys love to play) is a kind of self-torture. I’m just not into that.

But, even before my babies were born, I could not handle the tension in a thriller or horror film. Jaws, Unfaithful, Silence of the Lambs. Those movies marked me. I wish I could un-see them. And books? I still remember the name of one I read back in the seventies called Harvest Home. It was so appallingly terrifying that I threw it away when I was done with it. I remember reading, or trying to read, Misery by Stephen King. Very clever story line. Oh my god, though. I was so freaked out by every scene, every approaching scene of torture that I had to employ the only device I could come up with short of putting the book down and never picking it up again (and I was too far gone by that point, I wanted to know how it ended!): skip ahead to the horrible scene, read it with one eye squeezed shut, go back to where I had been and then read through, skimming as I hit the horrible scene for the second time.

What is it about that technique that works? I’ve used it over and over in reading this kind of book. And with videos? I’ve used it there too…fast-forwarding to the scene, the inevitable, pain and doom-filled moment…and then going back to glide through and beyond.

I want to cut the tension. I want the spoilers. Give me the spoilers! I want to know what to expect when I am in that moment, heart racing, breath getting shallow. How will it end? How will it end?

And that’s exactly how I’m feeling these days. Maybe that seems a bit dramatic, but I’m just being honest. I want to get through to the other side, through the horrible waiting that happens on surgery day, through the morphine haze days, through the uncontrollable shaking with pain days, through the days of Ben learning how to do all his activities with a spine that won’t bend in the middle. I want to be on the other side.

I have been worrying so much about those days in the hospital and I know it’s such a waste of my energy. It’s not like [announcer’s voice]: Susie was so thoroughly prepared having done so much worrying in the weeks leading up to her son’s surgery that on the day of that surgery she had no worries at all!

No, that ain’t so. I know it. I know it I know it I know it. Worrying today is just an empty exercise in causing more pain. Having visualized it today, I will STILL have to go through it on August 15th, however it plays out. There’s no getting out of it.

A while ago, Ben likened his scoliosis to the shark in Jaws…(cue shark’s theme song)…da dum…da dum…circling out there in the ocean…waiting for what was to come. I feel it now, too. And so, to mitigate that dreadful waiting, I have been distracting myself with PREPARATION. I have started packing. I have started a new uncomplicated knitting project. I have been making lists. I have been making itineraries (because, I will say, that I DO have a lot of stuff to organize before I leave...Harry's life? Toby's life? the animals? Yeah, I DO have stuff to do...). I have a new, engrossing book to read. I have my calendar getting full with who will come to distract me each day.

That’s a lot of preparation, I see. All to survive.

I don’t know if you noticed, but I have perfected this art of tension-cutting. I didn’t say I never read those kinds of exciting books. No, I do read them. I love mysteries. I loved the Girl with the Dragon Tattoo trilogy. It’s not like all I read are romance novels. (Although I do love me some good ol’ steamy…oh nevermind.)

And in life, there’s no avoiding it.

But this next chapter? This next scene? I just want it to be over. In fact, I want to skip it completely.

So, I’m going to close my eyes and you let me know when it’s safe to open them again. Ok?

Monday, August 5, 2013

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.