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.

On top of the world

Ben, age 15, on top of the world.

In December Ben told us that he wanted to go skiing this winter. We were surprised and we were thrilled. This was the first substantial physical challenge that Ben has wanted to undertake since he had his first scoliosis surgery three years ago. This was a sure sign of Ben's true center breaking through, most certainly a return to himself.

Exhale. I have been holding my breath for a long, long time.

Mark had taken Toby skiing twice last winter on some homeschool ski trips arranged by a friend in our community which made this Sport of Kings affordable for us. He had planned to take Toby again this year and when Ben spoke up we gave a resounding "Absolutely!"

And then I said, "You know, you'll probably fall down a lot."
                     "And it might hurt."
                                           "And your back might get sore."

"Yeah, I'll be fine," said the boy who generally complains about back pain with any exertion involving chores.

We talked to Mark Archambault, his awesome physical therapist, and he said, "Are you going to snowboard?"

"NO," I cut in. "Too dangerous."

"Okaaaayyy," he said, sideways at me. "No moguls then."


Ben was always a physical kid. He had good balance, coordination, confidence, and the nature of a real athlete. He loved speed, challenge and almost any risky situation. He rode off into the sunset on the tiniest little two wheeler when he was just 4 years old. He didn't need the training wheels we made him use, only because his Big Brother Harry hadn't quite mastered riding the bike without trainers yet and we didn't want little Ben to show him up! Ben climbed and ran and rode and bounced. He was always active and busy...until his first bout with surgery, when he had to be in the hospital almost two months. Even then he got back to his body in the months following, He even started playing ice hockey at age 10, a sport he loved, despite the tortuous hour at which he had to go to practices (4:45 AM).

Ben, age 4 riding his little bike on the wall in Lucca, Italy.

Ben, age 11, in the yellow helmet.

But once he had his first scoli surgery and had five titanium-nickel staples inserted into his vertebrae and a titanium rod hooked onto his spine and ribcage, and once he started having surgeries twice a year and was in a continuous loop of preparing for surgery--recovering from surgery--waiting for surgery--etc., well, certain things were uncomfortable and certain things were just off limits and he became much more of a couch potato. Or at least a desk chair potato. And really, who could blame him?

But knowing what I know about him, sensing his unhappiness and dis-ease with his own body, I've found it hard to see his spirit be dormant for so long. I've suggested different possibilities: Swimming? Tennis? Hiking? But the truth is, there aren't a lot of sports he could physically manage and I believe that he has not had much trust in his body, nor the desire to feel himself in it.

Until the snow called to him.

The first trip to Sierra at Tahoe, in late January, Ben started with a three hour private lesson. "He has a lot of hardware in his back," Mark told his teacher that morning. "Oh, we all do!" she laughed, pointing to her neck and letting them know about her car accident of years before. She took good care of Ben and taught him the basics for his first day on the mountain. In the afternoon he hit the slopes with some of his buddies who had also come up for the two day trip. He came home exhilarated.

The second trip Mark played SuperDad and took five teenaged boys up to Tahoe for skiing fun. Toby and Mark skied together while Ben skipped the lesson, and went up (and down) the mountain with his friends starting the first morning. By the end of the first day he was on the Black Diamond slopes, skiing with precision, control and confidence. He was thrilled.

The third trip, well you see how this is going...My most physical of boys had found his true nature again and, as his mama, watching from the wings all these years, well, it just does my heart good.

Except for the lack of a helmet...Yeah, THAT'S gonna change next year!

Which leads me to...next year.

On April 23rd we'll be meeting with Ben's new surgeon at Shriners LA, Dr. Cho, the doctor who cared for him in November/December when he had to rush to LA for emergency surgery. We've had all his care moved to LA (so much closer than Philly and we have a whole network for support people there) and have two surgeries coming up this year. I'll know more after we see him, but from what Dr. Cho said in December, he will be removing Ben's rod first, waiting about three months, and then doing fusion.

Sigh. BIG BIG sigh.


Interesting that Ben has finally opened up to his physical spirit on the cusp of such a huge change to his physical self. Interesting that he is happier right now than he's been in years, right on the verge of his third major MAJOR surgery. Interesting that he will have to put skiing on hold, most likely, next winter, until he is through his first year post-fusion-surgery.

I can't help but think, though, that it's the best way to go into it...feeling good and moving more than ever...with a very fresh memory of the wind whipping through his hair, the sting of cold air in his eyes, and a sunburn on his cheeks. Just enough of that memory to call him back out there to reach his potential and have a real rush from life.

Toby gets a whole post!

beautiful photo by Muggs Bees Photography

Toby. My sweet little guy just doesn't get much air time here on ye olde blogge.

That seems to have something to do with the tsuris scale, I suppose. Tsuris being the Yiddish term for woe or troubles. Tsuris being one of my loudest inspirations for writing, that would leave my dear Toby out in the cold. He's my EASY child. My Wakes Up on the Right Side of the Bed child. My golden-hearted child. Though not completely trouble-free, he is remarkably healthy and content with life.

Toby's my baby. Number 3 following two boys with some BIG personalities and needs. He is the little brother, sometimes the annoying little brother. (I laugh loudly when Harry comes to me complaining of this or that that Toby is doing to drive him crazy. "But...but...YOU do that all the time!" I splutter. They are very similar in some ways, some annoying ways!) He is all heart. He is all sweet. He has a very active inner life. I often feel I need to hold him down to earth like a helium balloon...or he will float away. But, despite all this and despite those charming freckles and that adorable dimple and a silly, almost naive way about him, he often surprises us with an astute observation, his sophisticated vocabulary, and his deep compassion for others.

Toby turned 12 today. This morning I had to wake him up early-ish, for Hebrew school, and as I sat down on his bed he rose up sleepily to hug me. We fell back on his giant stuffed penguin (Agent P) and snuggled for a while, both of us amazed that he was the grand age of twelve. It feels grand, it feels much more mature than 11 or 10 or all those years before it. It's a precipice year, preteen, on the verge of the very next big move. He will become Bar Mitzvah just one year from now. He'll read from the Torah and teach from the Torah. It's a grown up thing to do. But today we snuggled and that was perfect.

When Ben had his first hospital stay, for brain surgery back in 2006, Toby had just turned 5 and was in preschool. He and Harry stayed home first with Grandma Joyce (Mark's mom) and then Nana (my mom) as our one week in the hospital turned into four weeks and then two months. Toby was their shining little beacon of hope and happiness. Both grandmas told me he was enduringly cheerful, calm and grounded. He happily went off to his wonderful preschool in a little red cottage on a sheep ranch/commune in the little hamlet of Bodega every day. He even gave his navigationally challenged grandmas directions there when they became disoriented. His sweet little voice was on the other end of the phone when I'd call to check in. He missed me, yes, but he was doing fine and in fact, was buoying up his grandmas and his brother with his positive strength.

                                  This is a video Harry took in 2006 when Nana was staying with them during 
                          Ben's hospital stay. It was a miraculous occurance of snowfall in Sebastopol. 
                          What I love is hearing their voices, especially sweet little Toby...and Harry, 
                          too, before his voice changed!

When Toby graduated from preschool he was thrilled to come home to homeschool with his brothers. Since he never went to an actual "brick and mortar" school (as we strange homeschoolers call them) he was never tainted with the "if it looks like school and smells like school, it must mean coercion" mentality. Hence, since his first day homeschooling he has been open to many and most opportunities and activities. "Yes!" is his most frequent answer when asked, "How about x?" And because of this he's done Aikido, nature studies, 4H, ceramics, math, art, crafts, geography, cooking, animal care, walks, hikes, biking, board games, video games, card games, D&D, chess (he taught ME how to play), LARP, and more. This year he's studying French (he wants to be a French chef, apparently), the science of the origin of life in the universe and on Earth, Hebrew preparation for his Bar Mitzvah, boys' book club, and ballroom dancing (following in his big brother's footsteps). Toby learned to read when he was 9, late for the school standards I was taught as a teacher and reading specialist. he learned to read playing Pokemon, Monopoly and Apples to Apples. He learned because he was ready and wanted to learn. I didn't teach him. Had he gone to school, though, he would have been labeled slow and "at risk." I know this because I worked with those kids when I was teaching. Instead, he came to it when he was ready and had no thoughts of having a disability. In fact, the issues he had early on have gone away with time, and no intervention, no beating down of his self-concept ever happened. His sweet and golden nature remains unscathed.

It's been very important to me to protect that in him. Toby is my brand new shiny souled boy. I never really thought about reincarnation until I got to know my kids, but clearly, it exists. Ben was born an old soul. It shined out of his eyes the first day I met him. Seeing the road he has to walk, and how he walks it, it's more clear to me than ever that he has lived many lives and in this life is doing some "time." Harry feels like a fairly new soul to me, but not brand new. He has an enduring innocence despite his age, being a first child, having had some hard knocks and a dark side to his emotions. But Toby...Toby has always seemed "ding free." He emerged with a sweet, untainted heart. He does not tend towards cynicism, sarcasm or ill humor, like the rest of us in the family! He never intentionally hurts anyone, he never lashes out. It's as if he has no experience with the harshness of life. He almost can't see it, or can't register it when he does.

Watching him navigate his relationships is a learning experience for me. It takes a loooong time to draw the last straw from his back, as it were. He rolls with the punches, is incredibly tolerant of difficult behavior in others, and is quite loyal. Recently, I asked him about a boy in one of his classes who I had heard was disrupting class. Was it bothering him, I asked. "Oh no," he said. "That's just who he is. It's fine with me." He is very social, is online with friends playing games most days, his voice ringing through the house as he chats and jokes and giggles.

He is mightily connected to his brothers, too, worrying deeply about Ben when he's going through surgeries, and shedding tears when he thinks about Harry growing up soon and leaving us for his grown up life. (That probably won't be soon, but that doesn't matter, to Toby it will be soon enough.) He hates being pushed aside by them, and he loves to bug them, as most little brothers do. But it gives him unparalleled joy to be included in their play, their circle and their arms.

When Toby was being born he just wouldn't come down the birth canal. He seemed to be in distress every time I pushed. It turned out that his umbilical cord was tied in a knot. Our Mien babysitter told me it was auspicious, though I don't remember what for. Apparently, the Egyptian ankh is likened to an umbilical cord in a knot and might be thought to represent the flow of Life from the Divine to the Human the way life flows from the mother to the child in utero. Toby and I talked about it today. He's definitely not someone who turns himself into a pretzel to satisfy other people's expectations, and he doesn't get tied up in knots about much of anything. But Divine Life Force, I can see that. He's got soul that kid.

Healing

The other night I dressed up fancy and took Toby to his first Holiday dance with Nordquist, the ballroom dance program that he just started in October and that Harry was a part of for the four years previous. Harry came with us, spiffed out in his Steampunk bowler and goggles, vest and bow tie. Toby was in his suit, with the addition of pocket bling (a silky blue hankerchief). It was lovely to watch my youngest man dancing the box step with adorable little girls (and some bigger ones, too) in stockings, white gloves and pretty dresses. He even danced with me (as did Harry, who spent the evening tripping the light fantastic with old friends). A treat.

The truth is, what I really wanted to do that night, the night after returning home with Mark and Ben from Los Angeles, was to curl up in a ball under a big cozy quilt with my whole family and fall asleep. I didn’t want to have to make small talk. I didn’t want to have to go out in the world. I didn’t want to think or be polite. But, I did it anyways…being a mama oftentimes (I almost said sometimes—ha!) requires me to do what needs to be done, rather than what I’d prefer to do.

The aftereffects of Ben’s latest hospital drama are so familiar, and this time, rather than push through and do everything, I am trying to honor the messages from my mind and body as much as I can. I have thought so many times in the past seven years about the time post-brain surgery when I looked back first at about a month, then three months, then six and so on, each time thinking, “Sure is amazing how well I thought I was doing last time I checked. Now, I’m doing so much better!” Each time I realized with greater clarity how far I had come, and how long the process actually was. Saturday night at Nordquist, after telling an old friend about what we’d just been through, she said, “But…but…you look great!” Meaning, “How come you don’t look beaten down and falling apart?”

Friday Ben and Mark and I flew into Oakland from LA. Ben insisted that we stop in Chinatown on our way home to pick up dim sum from a few of the Chinese deli’s there. Mark raised our boys on all the treats in those shops and since moving away from the Bay Area, our family finds any time passing through Oakland to be a time to stop in Chinatown and fill up a cooler with shumai and pork buns. (Did I mention that Sonoma county has a dearth of good Asian food?) We arrived home a couple hours later laden with pink and white bakery boxes and all sat down at the table for dinner. The brothers had a joyful reunion, everyone wanted to sit near each other, there was so much smiling and laughing, and I was full of relief and love.

About an hour later, everyone had dispersed to their various chill time activities and Facebook updates, and Harry came to tell me, eyes brimming with tears, how upset he was that Ben had already started being harsh with Toby who was only wanting to hang out with him while Ben played his new video game. There had been a lot of bickering before all of this unraveled a week and a half before, and Harry was despondent that, “We’ve just gone right back to all that arguing. Why can’t Ben be nice? Toby and I didn’t fight the whole time he was gone!” It came out after a bit of unpeeling, that Harry was feeling quite blue and he didn’t know why.

Another hour later and Toby came to see me, eyes brimming with tears, unhappy that Ben had excluded him from a game he was playing, that he’d promised to play with him. More than anything he wanted Ben to spend time with him.

I went down to see Ben, but my heart was torn. I completely understood Toby and Harry’s grief after over a week of worrying about their brother, wanting nothing more than a nice, long, happy connection. I also felt that Ben, who had his birthday ripped right out of his hands when his surgical wound started leaking, who had just spent a week in the hospital and had had two surgeries, deserved the space to call his own shots, play anything he wanted, with or without whomever he wanted and not have to worry about anyone else’s needs. And, I also understood that Harry and Toby had held it all in and together for the five days they were on their own while I was in LA (I stayed past the two days I’d originally planned to stay AND in the process missed Harry’s 19^th birthday) and they had to let those feelings, those very BIG feelings, out. Thank goodness Mama came home! Somewhere to unload!

I held all of their hearts tenderly in my hands. I listened and hugged and respected their wants and needs, while trying to help them see each others’ perspectives. I listened to Ben when he said Toby was spoiling the story line in his game and helped him to see that his brothers just missed him so terribly that they wanted to play with him. I encouraged him to make some time, in the future, to be with them. I helped Harry unravel the conflicting feelings he had about his birthday being missed by the family, about having to grow up and be an adult before he felt completely ready (which he did, by the way, with flying colors), and about the let down following such a huge and traumatic event.

And after sharing this story with a dear friend she said, “Well, no wonder you’re exhausted!”

Mark and I have come home and collapsed every night since Friday. We’ve hit the hot tub every morning and evening. My body is aching like I was in a car accident: neck, shoulders, back, hips, hands, arms, head. My gut feels bloated and of course, chocolate has been on the menu a bit too much. I suppose I have been in an accident. An emotional car wreck. It’s amazing I’m not black and blue.

I could keep writing and tell you about the week at Shriners LA. I could tell you about our wonderful surgeon there, Dr. Cho. I could tell you about the nurses and our family and friends surrounding us with love and care. But that will have to wait for another time.

For now, I will go rest and nurture myself and my kids and save my energy for healing.

Harry dancing with a friend Saturday night.

Toby dancing with his mama. So sweet! 

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.