Thursday, November 29, 2012

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 15th 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!" 


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

Friday, November 16, 2012

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!

Monday, November 12, 2012

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 11th surgery.


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.