At the edge of the lake

I awake, the tension in my back becomes noticeable immediately. I breathe in deeply, filling my belly with air like a vase filling with water. I let it out slowly and then do it again. The tension begins to ease.

We are entering the final phase before Ben’s final surgery and I am feeling it. I am feeling like I’m about to step off a dock into a lake, the dark glossy surface hiding the treacherous depths below. What is lurking there? I’m not sure.

This has happened before. It’s all happened before. I’m not pushing the feelings away. It is where I am, it is what it is. But feeling all this, the fear and anxiety, the knowing of what’s coming and the knowing that there will also be surprises and things I’ve forgotten to prepare myself for, things I couldn’t possibly have prepared myself for, well, feeling all that is heavy.

Ben is feeling it, too. He was gone last week camping with his good buddies, playing Live Action Role Play (LARP). What better activity to engage in three weeks before major surgery? Be a mage or a monster. Collect magical powers. Slay a few evil dragons. (I’m sure I’ve gotten the details all wrong, but you get the picture.) Sounds like good therapy to me. He came home exhausted, happy, and dirty. He took a shower, rested and dove right into a very cranky state of being. Headaches, back aches, general bad mood. Who could blame him?

Mark is feeling it, too, though he rarely expresses it to me. Strong and silent. Removed.  

That’s hard for me, if only because I need him and I need to talk to him and feel connected. I process through talk, he processes through silence. I can feel us getting farther and farther apart…floating on the lake…I can’t reach him and that treacherous stuff under the surface? How will he save me from it if he’s too far away for me to reach?

We usually are very good partners, and we’ve weathered hard times over and over, but we don’t do Hospital well together. Over the years, Mark’s been there at the battlefront for all but one surgery. I’ve been there for half of them (seven, if you’re counting). When Ben was in Children’s Hospital having his brain surgeries we were both there, in our little shells, trying to just survive. I remember one day, taking a break at a local café while one of the grandmas stayed with Ben in the ICU. We were nearing the end of our time there, we both knew that. Ben’s wound was finally responding to treatment and healing and he would be released soon. We sat quietly at the window of the café, drinking our coffees, nibbling on lemon bars and brownies. I asked Mark to talk to me about what life would be like when we finally got home, what we would do, how we would manage the transition, and he just wouldn’t do it. Couldn’t do it.

I feel the need to plan and project into the future. I want to be prepared for it. What will happen? How will I deal with it? What if? What if? Worrying…some might call it that. A mother’s prerogative.

I did it when Harry was inutero. I was so anxious that something would go wrong and we’d be that 1%...Mark’s the math guy… “There’s hardly any chance that will happen!” he told me and my response was: “Yes, but someone is that 1%...it could be us!” Cleft palatte, cleft lip, death in childbirth, stillborn.  It happens. I know people it’s happened to. “How will we deal with it?” I remember asking him. “Will you talk with me about how we’ll deal with it?”

And “No. I can’t do that,” was his answer.

We’re in that place again. He can’t go there with me. I brought it up with him the other night while we soaked in the dark in our hot tub. “I don’t want Ben to have the surgery,” I said. And from him I had silence. Was he listening? Was he processing? Hard to tell in the dark. Even though I know better, I got hurt and grumpy. I hate that. I know better. I know that Mark is processing, too, feeling it too. But I’m still feeling alone and isolated in the moment.

I am tied in knots, worrying about this surgery. Even though I implicitly trust his surgeon, I am worrying. What am I worrying about? That Ben will die in surgery? No, not really, though realistically, it’s possible. That he’ll end up paralyzed? Again, a possibility, but even I can’t go there this time.

No, I am struggling with the fact that 13 of his vertebrae will turn into one long bone in his back, an irreversible change that will affect him for the rest of his life. What if he can’t stand how it feels? What if he doesn’t want to be touched or held or hugged anymore? What if he can’t ski or ride a bike or be active the way he wants to be? There’s no backsies on this one, people.

This is regardless of what I’ve already heard from many folks. That it’s the right choice. (Hell, it’s hardly a choice. More like an inevitability.) That he won’t be hindered by it…he’ll be able to ski and be active, indeed he’ll need to be active to feel his best. And that’s great because at his core he’s an active guy, and he’s lost that along this very hard way.

After all these years of going into and out of surgeries, it will most likely be a huge relief to be done with all that. But I can’t imagine what he’ll feel like to have so much metal in his body.

I can’t imagine how he’ll feel to have lost mobility in his core.

I am afraid to watch him in pain in the hospital, recovering from an 18” incision, his vertebrae being removed, ground up, packed back in with rods and screws. I’m terrified about seeing him in pain. I want to run away to another continent when I think about seeing him that pain. Oh my god. How will I deal with that?

I’m having trouble with it all.

Last night we had our last night as a family, all together, for the next five weeks. Toby’s off to summer camp today and when the camp buses return him to us in two and a half weeks, Ben, Mark and I will pick him, go grab some dinner and then drop Ben and me off at the airport to head down to LA for the surgery. (We planned it that way. Toby wanted at least one hour with us before we were off.) Mark will join us the next day. And the day after that is Ben’s surgery day. Ben and I won’t come home for another two plus weeks.

We wanted to have a blissful family time…dinner, game night…laughing…happiness…but, predictably really, it devolved into bickering between the brothers. Toby, hyped up on nerves about leaving; Ben, cranky with transitioning home after his camping adventure; Harry, resistant and uncomfortable about change of any sort…Everyone got on everyone’s nerves. In the end, even though the two older brothers went off to watch a movie together leaving Mark and me to play some games with Toby alone, it was okay. The tension was somewhat relieved. And before bed the older brothers came out to hug their baby brother good bye and wish him well at camp.

And now, as I look at it, I see where I went wrong. I wanted us to be blissful and happy, as if we weren’t all stepping off the dock into those treacherous waters together. Telling everyone, “It’s our last night together as a family for five weeks” was the death knell to a lighthearted family night. What was I thinking?

I need to process. I need to be in it to get out of it. And all I did was stir it up for them. Yet, if I hadn’t? If I hadn’t alerted them to the fact…Pay attention people! This is the last night we have together for a while! Take note! If I hadn’t said that, I’d be blamed later for not having warned them, alerted them, called attention to it all.

Sigh.

The thing is I haven’t been just preparing myself for what’s coming. I’m busy preparing everyone in the family. It’s my job. My thankless job. And yet, not thankless. I know that though they push back, they can see I hold it for them and I’m there for them when it’s time for a hug or reassurance or healing.

And so, I will continue to worry, and predict, and consider what is hiding under the surface. And lure their worries out of them too, consciously or unconsciously, it’s what I’ll do.

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.

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.

Mark and Ben

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

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

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

Sigh.

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

More on that later.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Midday update: Monday

I’m sitting in the jewel toned lobby of the Ritz right now. Mark and Ben are off on a jaunt to the Reading Terminal Market in search of smoothies and Thai food. I’ve opted to stay “home” today. (If only my girlfriends read this blog then I’d give you the details, but since this is blog has a mixed-gender readership, suffice it to say I preferred being in proximity to limestone and granite bathrooms over public toilets.)

Ahem.

Both of my boys were bundled up in thick jackets, and Ben was wearing a rainbow wool hat and chenille gloves to stave off the cold, sitting in the wheelchair we were loaned by the hotel. Ben has been holding himself at a very odd angle these past couple days. He walks with his left shoulder up by his ear in an effort to not antagonize the tender wounds on his back, I think. His color was a bit pale peach and his expression blue. Even the thought of Thai food wasn’t bringing on a smile. Yet, I can’t help but feel there is improvement here as yesterday he refused to even entertain the thought of venturing outside.

Thankfully, he slept long and hard last night. We had a straw all ready but he didn’t stir until 5:30 at which point I gave him some pain meds. He kept on sleeping until 11 am! It’s hard to balance letting him sleep with keeping him on a medication schedule, but his sleep was so deep that I chose to honor the dream state and its healing properties.

I have a bag with my knitting at my feet. Right now I’m working on something blue and fuzzy. Upstairs I have a thick wool cardigan going for myself, and have finished several pairs of warm fingerless mitts. I think I brought enough yarn to last me several months and I even bought yarn online and had it sent to the hotel in case I needed something else. I may even go visit a local yarn store a few blocks from here, just because I can. My knitting craze knows no bounds. I pictured myself sitting and sitting and sitting (which has proven to be true). And I wanted to make sure I had yarn for any mood, any project. I brought skeins of wool and alpaca, thick and thin, black, blue, yellow, multi-colored. The maid who has been taking care of our room since we arrived, Violetta, commented on my yarn and told me she also loves to knit. It turns out she is from Albania, and I was excited about a double coincidence: one of the most wonderful people I’ve ever known, my Great Aunt Violet, lived in Albania when she was a young woman because her father was the US Ambassador to Albania. Apparently King Zog of Albania took a fancy to her (she was quite the adorable little thing) and proposed, but luckily for our family she turned him down and came back to the states whereupon she married my Great Uncle Arpad. But I digress.

One would imagine that Mark would be a bit critical of my yarn fetish and my obsession. He, personally, has no use for wool garments. He’s superhuman and never gets cold, it seems. When it’s recommended to dress in layers he thinks that means a polo shirt and his leather jacket. But, you know Mark, he is generous to the extreme and since knitting appears to make me happy, it makes him happy too.

He’s such a unique individual, my husband. I’ve sung his praises before, rightly so. He is smart, capable, generous, funny, practical, loyal, lovable, reliable. And handsome. Rugged, these days. I’ve never met anyone else like him. But I’ll say that as soon as I met him I knew he was a grownup. He comes in mighty handy, too.

When I had known Mark only one month he was involved in a terrible accident at his work. A large machine he’d helped design and build that boiled and purified sulphuric acid exploded all over him and two fellow workers. They were sprayed with shattered glass and cold sulphuric acid (fortunately, it was not boiling at the time). Mark, who got sprayed probably second worst, was the guy who made sure EVERYone was ok. He got people into showers, knocking the low-flow shower heads off the pipes in order to get the necessary gush of water into their faces. He got the emergency crews there. When I heard from him that night (we had a date planned) he said he couldn’t go out, he’d had a bad day at work. I squeezed the real story out of him and he told me he didn’t want me to see him…his injuries were too horrible for me to stomach. I finally convinced him I could deal with whatever he looked like. I was adamant that I was going to tend to him that night. When I arrived at his house, I found him sitting in a chair with a pillowcase over his head, two eye holes cut out! This is the quintessential Mark story: he saves the day, handles the emergency, downplays his own pain, and still has a sense of humor. Unbelieveable.

Throughout our ordeal here in Philly, Mark has been my rock. There was never any question that he was going to stay with Ben at the hospital at night. This is what he did when Ben had brain surgery, 40 nights at Children’s Hospital. He is able to handle everything that comes his way there in the PICU…the technology (he can stop the machines from their errant beeping), the details (he notices and checks the medications going into the IV’s), and the lack of sleep (he just manages better on less than I do). He also doesn’t get squeamish about the medical stuff nor does he get emotional about the administrative stuff. He’s Ben’s best advocate at 2 am, no question. And it’s not that he doesn’t get emotional, period. When some Shriners came to visit us all got up in clown costumes (I guess they hadn’t heard clowns are scary!) and I tearfully thanked them for being Shriners and making all this possible, I looked over at Mark and his eyes were red and full of tears, too. My guy is a softie, but he’s the strongest softie I know.

It doesn’t stop there, as you know. I’d arrive every morning and he’d head out to find coffee and breakfast for all of us. At night he’d go out and pick up Chinese take out for Ben’s dinner. I brought dirty clothes and he’d take them down to the parents’ laundry room in the hospital and do our laundry. Every day he’s hunted and gathered whatever we needed, from vitamins to egg rolls to tampons to lattes. Oh and did I mention he’s also working?! He quietly answers 30 to 40 work emails a day, sends them updates, makes a couple calls. He never looks stressed or upset. Nothing seems to phase him.

I had moments last week of a passing guilty conscience. I mean, here I was every night tucking into the down covered bed in our hotel room, watching tv, catching up on emails or conversations with our friends and family, while he was squeezed onto an uncomfortable fold up cot or chair bed in the hospital. But, I also know our relationship is a finely tuned dance, and there are parts of this adventure that I have made the acquaintance of in excruciating detail. I must also give myself the credit for not shirking my duties. Ours seems to be a balanced partnership.

I don’t really know how to sum it up, other than to say I feel like one very lucky girl, hanging out here in our ritzy digs, knowing my wonderful guy is out there with our boy, making sure he gets his wish fulfilled: a tummy full of pad thai noodles, while begrudging me nothing. Big sigh.

Oddly enough I just ordered an iced tea, just as the Ritz’s front door opened and let in the chill winter air. We’re expecting rain tonight. Luckily, we’ll be warmly tucked into our cozy, down covered beds upstairs, together.

Oh, and for those of you who are interested, the current bribery tab for Ben’s breathing exercises excedes $150!!!

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A little later update: So, my beautiful boys just walked in…with presents for me, of course! Dark pink tipped roses and truffles. They wanted to get me a dozen chocolate noses (take a look at the photo below that I took of some a week ago), but only milk chocolate noses were available, which just won’t do. Thus, I received tiramisu and dark chocolate little balls of wonderfulness and roses. Mmmmmm.