rollercoaster

Ben, chillin' at the Ritz. (Thanks Cousin Hana for this pic!)

Ben and Mark return tonight after a week away in Philly. I apologize for not updating on Ben's progress sooner...it's like a big inhale. Somehow I get caught up in the holding of the breath, and once I exhale, well, it's just gone.

It's also a lot like a rollercoaster.

Waiting waiting waiting. This line moves so slowly. Ahhh. Finally we're at the front. Climb in the car and please don't forget to strap yourself in. This may be a wild ride. What's that you feel? Scared? Excited? Huge anticipation of what's to come? Oh yes.

Ben's surgery on Wednesday went easily. He checked in at 6:30 a.m. and was discharged less than 12 hours later. Amazing! I talked to him, or I should say I texted him, as usual, on his way over to the hospital and then all the way until he was wheeled into the OR. He was even more calm then last time, which was pretty darn calm. Didn't seem to have butterflies at all. I went back to sleep (it was still dark outside where I was) and was awoken by a call...from BEN...about three hours later. He was just waking up from anesthesia and he was in excellent spirits. He even made a joke about some pink unicorns flying by, teasing me that he was high on pain meds. He texted me not long after to say, "I feel fantastic." And he most surely must have. That boy was up and out of there so fast.

Zoooop! Up to that first hill. Looking good, looking good.

Not long after the surgery Dr. C came by to talk to Mark and shared that Ben's spine had been very stiff and he hadn't been able to get much correction at all. We had been looking at this surgery as a dividing line. Since Ben's curve had progressed so much over the past two years (from 25 to 54 degrees) we knew that if Dr. C could not straighten Ben's spine out to the low 40's we would not be able to continue with lengthenings of the rod, but would have to turn to fusion. If there was little correction in this surgery then we were apparently done with lengthenings. And fusion is HUGE.

Zoooop! Down, down, waaaay down to the bottom. Ugh.

So, why didn't I share this with you? Why didn't I write about it? Well, I was pretty exhausted on Wednesday. I'd been up at 2:45 am to text Ben and then didn't really catch up. I was emotionally exhausted just from the anticipation. I was blue about fusion looming, closer now than ever before. But, I knew we needed to wait for Dr. C to take the post-op x-ray and tell us what he saw there. [The other reason is that as soon as Ben's surgery was over I had to go into full on final details mode for the Dan Nichols concert that was happening less than 5 days later. (It was really a bummer that Mark and Ben had to miss it!) I was working on little sleep, was single parenting, and the only time I spent on the computer was going over details for the concert. Sorry!]

Since Ben got sprung from the recovery floor so fast, Mark didn't talk to Dr. C again before they left. Dr. C was busy doing spine surgeries all day.

You might understand my surprise then when I saw this email from Dr. C's nurse the next morning: "Dr. C said after the lengthening Ben measured 38 degrees so he would like to plan for another one in 6 months."

Wha-what? That's a 16 degree correction and even with leeway for measurement error that's still about 10 degrees correction. Significant.

Zoooop! Up to the top and flying around the twists and turns! Oh my stomach!

I literally wondered if Dr. C was looking at the right x-ray. I've been puzzling over that for days and will talk with him early this week. I don't want to argue or seem skeptical, but it's hard to figure all of it out.

Anyways, the other good news is that beyond being released so fast from the hospital, Ben's had little pain this week and needed very little in the way of pain meds. The usual is Hydrocodone and Valium to help with muscle spasms that occur after being moved around so much in the surgery. This time he was done using the meds about two days post-op. That's unheard of!

It also doesn't line up with a huge correction, so I'm not sure what to think.

At this point I'm just taking my gratitude and curling up with it on the couch. Thankful my boy is feeling great. Thankful this surgery is behind us. Thankful he was well cared for by his daddy and the Ritz-Carlton. Thankful they're coming home tonight.



And, folks, as we pull into the station please remember to grab all your belongs, and loved ones, and please come back and ride this rollercoaster AGAIN.


Oh yeah. We'll be back.

fermenting

What's that they say? When the going gets tough, the tough get fermenting?

Toby and I spent a quiet morning turning raw veggies into pickles. Garlic, carrots and string beans. I love the fresh jars of ferments. Lots of potential there. It's very easy to do and the results not only taste delicious, but are so good for you (beneficial flora and all that). A friend of mine taught a fermentation class in my kitchen about a month ago and the pickled carrots and sauerkraut that came from that were amazing. The boys have been asking for more.

And now that the jars are sealed and put away on the pantry shelf all we need to do is wait.

Mark and Ben arrived safely in Philadelphia late last night. Their day of travel included a (required) stop in Oakland's Chinatown to pick up a copious amount of dim sum take out (enough to last through lunch and dinner on the plane and, after hearing what Ben ate, enough to feed an army--or one teenage boy and a little left over for his dad).

"I love the Ritz," read Ben's Facebook post at about midnight. I love the Ritz, too. I love that they had cookies and milk waiting for him. I love that there were no surprises and all he had to think about last night was a cozy bed piled high with pillows. This afternoon, after waking up late, they headed out to Reading Terminal Market, their favorite food stop. (You can see the pattern here.) Mark got a call from Shriners: Ben is first up in the OR tomorrow morning. They'll jump in a cab at 6 am and I'll get up at 3 (our time) to text my boy. The very good thing about being first in is he has a good chance of being out before the day is through.

Last night, after dinner, I had one of those incredible heart-to-heart talks with Harry, who at age 18 is turning into the most lovely of men. He brought up an experience he had last summer that while excruciatingly painful resulted in growth, learning, and other existential riches for him. "If I could get in a time machine and go back to right before it happened, I don't know if I would," he said. "I learned so much about myself from that experience. Also, what a true friend is. I have so much more self-confidence now."

The blessing of adversity, isn't that another thing they say? So many tears we've wiped away and yet so much we gain in abundance and understanding about ourselves, each other, the world.

It's like life's fermentation. You start with salt and water (um...tears, right?), some raw veggies, some bacteria. You put them together and then you wait.

In the midst of a challenging experience everything is so raw. But sometimes, with time, a little stewing in the juices, out comes something good for you, something beneficial.

Tomorrow at 6:30 am EST. Be thinking of our family, of our middle boy. Visualize all the good that will come from this most challenging of situations. Thanks.

awesome

I got a call today on my cell phone from Ben.

"Well, Mama, I'm getting out of here today. Going back to the Ritz."

"That's GREAT! How are you feeling?"

"I am awesome, Mama. Let me repeat that: I. AM. AWESOME."

His voice was full. Full of pride and happiness and awesomeness. I haven't heard him sound so strong in months. Years maybe.

Earlier today I called Emily at the Ritz. She's the Assistant to the General Manager. I told her the story of Ben's text message from the lobby upon his arrival. I told her how he loved the desserts. My voice cracked when I thanked her for all the Ritz does to change Ben's experience of his medical travails. The Ritz is like an incentive program on steroids for Ben. Get up and walk. CHECK. Get up and pee. CHECK. Eat something. CHECK. CHECK. CHECK. The sooner you do all these things the sooner you get to go back to your comfy digs at the Ritz. Oddly enough, Ben does not respond to most incentive programs. He is not easily coerced, manipulated or motivated. But, he now knows the routine at the Ritz and it's pretty sweet.

That's it for now. Just an awesome update. So very happy to have it share.

the usual



Frozen Snickers cake ala the most lovely chef at 10Arts at the Ritz

 It's that night again. The night before. The night before Ben's next surgery.

I am here, sitting in the darkening office, twilight upon me. He is there, in Philadelphia, a tummy full of Thai food, tuning out the future, watching TV with his dad.

I didn't hear from the hospital this time. Days ticked by and no call came from Dave in Anaesthesiology. So, one day last week I picked up the phone and called him myself. "Dave," I said, "Ben's coming in next week for his surgery and I was wondering if there was anything you needed to tell us?" "Oh no, Mrs. M," says Dave, "We know you and Ben and we know you know the drill. We figured you'd call us if there was a problem."

Sigh. We're regulars. Regulars in Anaesthesiology (and the OR, and the surgical floor, and the cafeteria, for that matter) at Shriners Hospital on N. Broad Street in Philadelphia. This is definitely not something to which one should aspire. It's not like when I was in my 20's and was so familiar to the guys in my favorite downtown Oakland Cambodian restaurant that they knew my voice on the phone. No, it's not quite that good.

Ben is so familiar with the drill that he knows, at age almost 14, which needles they use for his IV, which needles he prefers, in fact. That's too much. Too much information. Too much surgery.

Of course, a plus is that he's also a regular at the Ritz. That is good. Last night, after an easy cross-country flight, Ben sent me a text that read: "Hello ritz it's good to be back." And a little bit later a platter of delightful desserts arrived at his doorstep. Then this text came to me: "HOLY SHIT THEY JUST COMPED DESSERT AND IT LOOKS AMAZING IL SEND PICS BRB"  (*that's Be Right Back, for those of you who don't know the lingo).

Alas, there's a silver lining. Our story at the Ritz is beyond Good. Good Samaratin. Please don't think this is a silver spoon story. Oh no. This is a good-to-the-last-tear-get-out-your-hanky story.

But, tomorrow he will have his ninth surgery. Mine too, if you want to think of it that way. It's sort of a two steps forward, one step back kind of deal. They're replacing the rod that's hooked onto his spine and rib cage with a longer one. After this he'll probably be an inch taller or so with a straighter spine for a bit. And then, as he grows and he is in a big growth spurt right now, it will curve up again...and we'll schedule another surgery. Dave won't call us, but the Ritz will put on, well, the Ritz, don't you know.

Not sure how soon we'll be back there for "the usual," but we will be back.

Surgery the Sequel: Chapter Three

A Yin and Yang Afternoon

Today Toby and I attended a picnic celebrating our friend James, a 17 year old Non-Hodgkins Lymphoma survivor. He was diagnosed with the disease at the turn of the year. He is one of Harry's friends and his mom, Sarah, is one of my dearest buds. This year he had chemo and radiation, lost all his hair, grew it back, and now is in the clear. The party was a thank you from Sarah and James' whole family out to their community for all the blessings and pots of soup and nights someone let the cat out and hugs that had been bestowed upon James' family this year.

I knew quite a few folks, mostly from our days at Harmony School in Occidental. People who know me and my kids and were actually around when Ben had his first serious experience with surgery, brain surgery, over four years ago. Of course, these folks want to know how Ben is and so, I told them. Mostly they were shocked to hear he was back in Philly for another surgery. It's like whiplash how fast the turn around was for this one.

At one point I stood with a few moms who were there for me four plus years ago. Moms who drove down to Oakland to take me out to dinner after Ben had been in the hospital for seven weeks, had had three surgeries and still wasn't healing. They all piled in a car and drove down to take me out for a diversionary dinner at which I learned that not only was I not the only one with a kid who'd spent time in the hospital, but every single one of us had a kid who at one time or another had spent time in the hospital. Every. Single. One.

Toby and I had another stop today. We were attending a gathering at our friends Anna and Dennis' home. Anna fought breast cancer two years ago and they just found four more tumors in her chest. So we gathered to bless her with our words, prayers and songs. I had my guitar with me and I led the group in some beautiful melodies of hope and healing.

Yesterday, just a day after Ben's surgery I felt such overwhelming lack of ambition. I was deflated, like a popped balloon. Looking back over the few weeks preceding the surgery I could add up the anxiety, the anticipation, the dread, the desire for it all to be over. And following that crescendo, Friday the surgery came and went in such a blur (I was truly asleep for most of it) and the relief was so strong to have come through, that Ben was okay, that it was over. The day after is always the day after. It's not a cliche for nothing. My day after was not so horrible, I suppose, but it still took me a bit by surprise.

As Toby and I were leaving James' picnic we got a call from Ben who had spent the whole day in pain. For some reason today was a hard day, but I've been told the third day after surgery is hard. That was today. Full of pain. (Have I mentioned how much I hate being on the other side of the country from my baby who is in pain?) He spent the day in bed. Grandma Joyce came to visit from New York. Dan the concierge brought him a popscicle. He's got his meds, so they're dealing with it. But, sheesh, I'm so tired of the pain...and it's not even mine.


I suppose I tell you all of this because we talked about blessings today at Anna and Dennis'. And Sarah's party was all about gratitude. And truly, when I have some energy I am so totally grateful for my friends, for hugs, for the popscicles and emails the blessings we get from our communities.

But in order to really see the blessings, there seems to be so much pain. Months of chemo or surgical wounds healing. Tears shed by a little brother missing his big brother while he's away. The anxiety and anger that fills my stomach as we wait to hear the results of a test. It feels like too much at times. And yet, I realize it's what life is all about. Every single one of us has wounds and loss and grief and where would we be without each other?

So, thank you for caring about me and thank you for accepting my songs of healing. This is not the end of my story, but I have a sniffly child sitting next to me who needs a hug.

Surgery the Sequel: Chapter Two

Our Hero Bounds Back

 

Next time I’m going with him. 

It didn’t occur to me until right before Ben left for Philadelphia that I’d never been apart from him when he had a surgery. Never, not once, in all the seven surgeries he had was I in even another building. And this time, surgery #8, I was across the country. That’s a bit too far.

It was not easy. For me. For him. I don’t want to repeat it.

I’ve never been with my other children when Ben’s had surgery either. I’ve never seen their anxieties rise to the surface, I’ve never hugged them before bed the night before his surgery to reassure them he would be okay in the morning. I’ve never seen their joy when hearing his voice after a surgery. And felt their relief when told he was on his way back to the hotel.

Until today.

Not that I didn’t know they felt all those things, but being present with them, and realizing that they also need a parent around during these moments of family crisis was important.

Last night Ben called before going to bed, completely undone by the distance between the two of us. It took a lot of self-control to console him and peel him off the phone into Mark’s arms. He requested that Harry, listening in on the speaker phone, invent a transporter device immediately so I could get to Philly on the double. He asked about 75 times that I hop on a plane and fly out to be there in the morning. His voice was like a small child’s, so vulnerable and sweet. Why did I agree to stay home, I asked myself.

But Toby held my hand as we walked up and down the stairs getting ready for bed, collecting toothbrush and toothpaste, a book to read, his retainer. I needed to get some emails out and update my Facebook status, and he spent the whole time calling from my bedroom, “Are you done yet? When are you coming in here?” Harry gave me a bearhug on the way to bed, after a long anguished day of the blues. I’d attributed it all to general teenage angst (I am so blind sometimes), but this morning he said, “You know, I think all that was about Ben.” You know, I think he’s right.

Next time, I think we’re all going with Ben.

Time has been surreal today. I few hours after saying goodnight to Ben, I awoke at 3 am, to call him as he rode in a taxi to the hospital. It was 6 am in Philly. He was still scared and unhappy, but at least the night was over. I noodled around, playing solitaire on my iPhone (and aggravating my carpal tunnel pain!) while I waited to hear from Mark that Ben had gone in to surgery. About 45 minutes later I got that call and somehow made my way back to bed, falling asleep until the next call, that he was out! Again falling asleep, I was awakened to hear Ben’s voice, groggy and fuzzy, but alert enough to tell me it was over and he was in his room with Daddy.

The sun was up here. At any rate, it was light and foggy outside. Toby woke as I squealed into the phone with delight. “It’s all done! Ben’s out of surgery! Do you want to talk to him?” I asked and so Toby’s first words were for Ben today.

Fast forward through a day of calls and emails and Facebook status updates, it’s 5 pm here and 8 pm there and Mark and Ben are waiting to be discharged. Tonight!

For those of you still unclear on what exactly took place today, here’re the gory details:

• An incision is made on his upper back, into a previous incision, I believe.
• The screws that hold the rod onto his ribs (with hooks) are loosened.
• The rod is moved down about a centimeter.
• The screws are tightened.
• The incision is stitched up and bandaged.

Two hours under anesthesia, but really only about 40 minutes of surgery.

He was given the IV after being sedated which took a huge amount of anxiety and stress off the beginning of the process. He has a large fear of IV’s having been a human pincushion at one point in his life! He had morphine post-op but hasn’t needed any pain meds since. He’s walking around, drinking, eating, joking, peeing…everything you want in a patient before being discharged.

I called and alerted our forces at the RC about our hero’s return. Earlier than expected, but with admirable wounds to prove his mettle. Because of our caution he has three days to play in Philly. A good thing.

Did I say I’m going with him next time? Did I say we all are? Just wanted to mention that.

Surgery the Sequel: Chapter One

...departures and arrivals...

Ben and Mark left yesterday for Philadelphia. Toby, Harry and I waved and blew kisses from the doorway (ok, I blew kisses and Harry and Toby yelled, "Bye! Buh-bye now! So long! Have a great trip!") and then turned, breathed a sigh of relief and went back into the house.

The anticipation truly was terrible, but the reality was a relief.

The night before Toby was so anxious he could barely sleep, had nightmares about zombies and ultimately threw up. Mark, downstairs sleeping in Toby's bedroom to provide some degree of comfort, took care of the situation but didn't get much sleep himself. I was upstairs listening and then panic-stricken that Toby had the flu, had infected Ben and Mark and that they would either wake up with symptoms or arrive at Shriners on Friday barfing their guts out. Lovely image. I didn't get much sleep.

Ben, tucked in warmly next to me in bed, slept soundly.

In the morning, Mark and I refigured our plans for airport delivery. Rather than my driving them down to the airport shuttle he decided to drive them all the way to the airport giving them time stop in Chinatown (Oakland) for goodies for their flights. This also gave us time to make sure Toby was truly not sick. (He was fine!) And because we'd arisen for an earlier time commitment that left us with literally two hours to kill.

When Ben heard "Chinatown" he leaped out of bed and ran to get dressed. (Steamed pork buns and sticky sweet rice cakes are super motivating for my kids.) That done, he asked to play a game with me. So, out came the board games...and up until the minute they left the house the whole family sat on the floor playing Scrabble.

No fighting. No bickering. No whining or crying or hiding away with electronic toys. Pure, good old fashioned family togetherness.

A group hug of three brothers and they were out the door.

Throughout the day I received texts and phone calls from the wonderful folks at the Ritz-Carlton, making sure every "i" was dotted and every "t" was crossed in order for Ben to have the best possible experience. I heard from Kimberly, the Medical/Business Liason, who was on vacation. Kimberly, enjoy yourself!

And I heard from my boys. They called from Oakland International. They called from Phoenix. They called from Philadelphia when they were waiting to "deplane." Their day of flying across country was perfect. (Lots of cute babies, according to our baby lover, Ben.) He was in excellent spirits. They arrived at the RC after midnight and found they had the SAME room we had in February with the additional bonus of chocolates, cookies and cold milk waiting for them.

This morning they received hugs from old friends: Violetta (our housekeeper), James (the concierge), and Kylie (from the front desk in February, but who's been promoted to Guest Relations), and had breakfast at Dan(the concierge)'s favorite cafe around the corner.

Mark reports that Ben's comment upon awaking today was: "I think this time it will be easy."

Crossing my fingers, crossing my fingers.

Catching up

Foggy summer morning in our new garden.

I would have to agree with my friend Sarah who said recently that the longer you stay away from your journal the harder it is to return to it. I have definitely been remiss with this blog but life has a way of getting in the way. I have been overwhelmed by the minutiae, and unable to find enough time to gather my thoughts, cull through them, and focus on this task.

Truth be told, the main reason I didn’t write a post just after Jasmine’s wedding was that the only thing I could really talk about was slugs. Yes, slugs. SLUGS. With all the wet weather and then the warmth, the slug population in our area has skyrocketed and there are slugs everywhere. In the garden, on the front porch, all over the hay barn, on the wheelbarrow, inside the grain bin, inside the grain bag.

There were so many all over the hay barn, that I adjusted how I dressed for the task of feeding the animals every morning: cowboy hat pulled snuggly down to my ears, flannel shirt buttoned up to my neck, collar up, even as the weather warmed up. The thought of one of those slugs being shaken loose and falling onto my head and down into my clothes almost kept me from the job. They are baby slugs or a small variety, but their tininess doesn’t make them less disgusting to me. People keep saying, “Too bad you don’t have chickens” but if I did I’d then have to face the fact that chickens eat slugs and then I eat their eggs…better not to know.

Slugs on the outside of the hay barn as seen from the inside.

Above L, the hay barn. Above R, slugs as seen on the outside of the barn.

It offended me to follow such a pretty post with a post about slugs. But for a bit, that was all I could think about. So I didn’t write.

Almost three weeks later the slug fest is pretty much over and I feel that there’s enough space between the slugs and Jasmine’s wedding to proceed.

The slugs (guess I am not quite done) have been ravaging my garden as well. Despite the copper tape edging all of my raised beds and the saucers of beer that I’ve put out, there are nibbles taken out of almost every leaf and some crops have had a hard time overcoming their place in the late night buffet. The weather has changed enough that I think we’re getting ahead, the garden is bursting with new growth. I almost wrote “Maybe there’s enough for everyone” and then changed my mind. There’s not. I’m selfish about my garden. I want it all for us humans at Three Boys Farm. The tomatoes, the beans, the lettuce, the tomatillos, herbs, and nasturtiums. The pumpkins and cucumbers and squash. The flowers that the boys planted. I want it all for us! That’s why Mark and Harry built so many gorgeous gopher-proofed raised beds for me this year. No sharing! Once we start harvesting, if you’re human come on by. If you’re slug or gopher, this offer is not for you.

Summer is officially here. The camping trips, beach days, afternoons at the pool or the Russian River, and Fanwar (LARP: Live Action Role Play) events are filling the calendar. The boys sleep late while I go out to feed the animals and water the garden. I love this weather as I have always loved the beginning of summer, when you can really appreciate the change of seasons.

People ask me if we stop homeschooling for summer and I usually respond that our whole year looks more like most people’s summer vacations, so no, I don’t tell the kids, “It’s June. Stop learning.” and when September comes around, “It’s September. Start learning.” Our homeschool life IS learning. Wherever, whenever. We’re not gathering every morning to say the Pledge of Allegiance and the boys don’t sit in desks doing penmanship. There are no timed quizzes and there is no extra-credit busywork. By my bedside table are some new books that are inspiring me about science and nature journals, and one called Macbeth: for Kids to get us prepared up for the Sebastopol Shakespeare Festival next month. But no, we don’t stop for summer.

I saw some school kids the other day in town, a small gang of teens in cut-offs and tank tops, and they had the definite look of kids just set free from school. A wave of recognition swept over me, a sensation I remembered very distinctly, that feeling one has the first week of summer break. It’s pure freedom. No homework, no early morning bus rides. No pressure. I grew up in Santa Monica and those first weeks of summer were amazing because we’d grab our towels and hit the beach, just a few blocks from my home. This season was such a contrast to the rest of the year, not to mention the weeks preceding the last day of school/first day of summer break that had so much anticipation built in. The weather was warm and the ocean was calling to us.

My kids don’t have that definition in their lives even though our activities change during summer. Their lives have so much more freedom on a regular basis that they don’t chafe at the end of spring to be set loose. That makes our life different from a school-based life. Better in myriad ways, I believe, than it would be if we were sending them to school every day. But I still felt the nostalgia for the traditional when I saw those kids in town the other day.

Harry’s bags are packed and his hair is newly shorn for three weeks at Camp Tawonga. We’ll be taking him to the camp bus pickup tomorrow morning. This summer he’ll be an S-I-T, Specialist in Training, his ultimate goal is to be the arts and crafts counselor one day. We’ll miss him, but it will be a great experience for him and he has always loved Camp Tawonga. Toby will join him in a week, and is thrilled that his big brother will be a “counselor” while he’s there.

The rest of the summer holds three camping trips (two to Mendocino and one to Yosemite’s Tuolumne Meadows), cooking camp for Ben at Sur la Table, and the Homeschool Association of California’s annual conference in Sacramento.

Oh, and a surgery for Ben.

Three weeks ago we took another x-ray of Ben’s spine and found that his curve has progressed to 27 degrees, up 12 degrees from the last x-ray. This is a sign of growth. As he grows the rod is holding his ribs down and so we need to get him to Shriners Philadelphia so Dr. Cahill can get in there and adjust it. Just a centimeter…or should I say, a WHOLE centimeter! We just got the surgical date (July 30) this week and have begun to make the arrangements. Ben and Mark will be going while I’m in Yosemite with the other guys. We had two choices of dates, July or early October and the latter just felt too far away with the amount of change we’d seen in 7 weeks. Also, Ben had already opted out of the Yosemite trip, so it wasn’t a real conflict for him. Well, on one level, anyways.

I called the Ritz-Carlton yesterday. It was just like I remembered. As soon as I said who I was (speaking to the general manager’s assistant) I was greeted with, “OH!! How is BEN?! Everyone is asking about him!!” Within minutes the wheels were in motion and a “superior” room was booked for us and I was arranging for our star to have a tour of the restaurant kitchen one of the days he’s there. Those folks are so incredible. They want to do anything to make Ben happy, it’s truly incredible. Ben and I were interviewed recently for the Philadelphia Inquirer about our stay there, since now the hotel has developed a special program called the Medical Concierge, to help people staying there who are in Philly for medical treatments. Ben’s quote is priceless (“They treated me like a god”), and his story was the lead story in the article. His picture (from my blog) graced the front page of the newspaper. If he was a rock star there before, he’s a mega star now. I’m sure he and Mark will really get the royal treatment.

That helps a bit, but this is Ben’s personal rollercoaster of emotions and he’s having a hard time of it. Just when he was feeling really good physically (running around and battling with foam swords at Fanwar events, and rolling and jumping into swimming pools), he’s facing down his demons again. July 30th is just around the corner, but it feels like February 15th was not so long ago. This surgery should be much less difficult, with fewer hours under anesthesia, only a day in the hospital, less pain, if all goes well. However, as much as he enjoys seeing his friends and fans and being pampered at the Ritz-Carlton, I think he’d trade it away in an instant to have what he calls a normal life. He’s had seven surgeries in his 12 years, with more to come, and that is bitter for him. For his mama, too.

If you’ve made it this far through my post, I will say thank you. And, I promise to try to keep up with my posts, even if it means following up beautiful and sweet with disgusting and slimy. This, is my life. I need to appreciate the definition!

Our last night in Philly, our Wow Story

Deep, deep sigh.

Here I sit, our last night at the Ritz-Carlton, our last night in Philadelphia. We've spent tonight packing, watching the end of the Olympics, eating dinner, and saying goodbye to our RC friends. It's bittersweet, surprisingly enough. 

This has been an extraordinary journey. Bringing Ben here for a surgery we were feeling both hope and dread about was beyond hard. Without the care of Shriners, the Ritz-Carlton, the VBS forum, the internet, and our friends and family it would have been a long and lonely experience. Instead, this has been a healing journey complete with attention, tenderness, smiles, room service, calls, emails, long baths, adventures, and hugs both virtual and real. Tomorrow we leave feeling so tended to, so cared for (so sad to leave, in fact!). And with a straighter spine (in at least one of us)!

The last couple days we’ve been coming to grips with the end of this adventure. Ben has been feeling pretty well. Mornings are harder than later (but, heck, they’re harder for me, too!) and he’s needed less and less medication to still the pain. Even so, he still has occasional muscle spasms that send him to tears. He has perfected the helpless child routine, as well. Our poor old middle child has loved having mama and dada to himself (and to do his bidding) and I’m sure when reality hits back home it won’t be pretty. He’s also loved having the celebrity status that has encircled him here. I would love to tell you about every time he got the royal treatment, but I can’t…there were too many times! Today, though, he was truly blue and very cranky. He was sullen and uncooperative until I asked him if he was sad about leaving Philadelphia. He nodded his head and said he didn’t actually want to go home, he just wanted all his friends and family to come live here with him. He is going to miss the ritzy life and he’s going to miss Dan (the concierge) and all of our friends here at the hotel. The royal treatment, I have to agree, is beyond belief.

I don’t know what this place is, but it surely isn’t like any hotel I’ve ever experienced before. Clearly, something happens behind the scenes at the RC that is all about taking care of the guests. Every single person here has smiled at us with the most genuine of smiles. We have developed personal relationships with so many of the staff. My mom teased me tonight that I could write their biographies. (Dan, the concierge is out tonight with his mom for her birthday which he’s going to miss next week because he’ll be in Hawaii with his girlfriend. Kylie from the front desk celebrated her mom’s birthday today with a brunch in her teeny-tiny studio apartment. Violetta, our housekeeper, returned home tonight with a bag of yarn from me, knitting being something we bonded over these past two weeks.) I know it’s not all them, I know that some of this has to do with us. We are real, we care about people, too. But, honestly, they all started out with a directive, I’m sure of it, to treat Ben (and his parents) with the utmost of care and concern, to tend to his every need and desire. And they don’t just deliver. They clearly mean it, too.

Violetta and me

Kylie and James (concierge) and Ben

Two days ago I sought out Mike Walsh, the General Manager, to thank him for everything. Our conversation started with an update about Ben and his surgery and Mike shared with me about his niece’s spinal fusion surgery that took place in December. When I started in on my “thank you’s” (thank you for making this possible, thank you for having such a great staff, thank you for your generosity, thank you, thank you, thank you, thank you…) I got choked up and said, “I don’t know if I can say this without crying.” And he said, “Now don’t do that, you’ll make me cry!” and sure enough, his eyes filled up with tears. What a mensch. I mean, really. This place is incredible. I told him what I just told you. I told him that we were made to feel like family here. He interrupted me then. “You are our family now,” he said. And then he told me that if and when we need to return to Philadelphia we are to contact him first and we will get exactly the same treatment, the same price, everything. He said that the Ritz-Carlton takes care of all of their clients, the conventions, the patrons at the restaurant, the hotel guests, but our story, our experience is what they call a “Wow Story.” It’s apparently, what the RC is all about. They are the Wow Story, though, in my opinion. Wow, is about all I can say.

Two days ago we had dinner in the hotel’s restaurant, 10Arts. It’s very chic, great menu. When we were seated our lovely waiter, Joseph, brought Ben a pillow for his back. He called Ben by name (Ben's fame precedes him, we've noticed). We had our meal, ate almost every bite. We were stuffed by the end, but Ben insisted on dessert, so he ordered bread pudding. Out came the bread pudding and then…out came THREE. MORE. DESSERTS. The chef comped us three desserts. They just wanted us to taste it all. We managed to squeeze it all in (ohhhh, I was soooo full! But how could I be rude and turn it down?!). One of the desserts included something exquisite, something I’d never tasted before that was so delicious: passion fruit marshmallows. So sweet and tart and fresh. A marshmallow! Amazing. So, last night we went down to the restaurant just for dessert. I had to have another passion fruit marshmallow. But, lo and behold, they were all out. Oh boo! I wept faux tears. The waitress, Olena, felt so bad for me but I laughed. That’s just the way things go, of course. We had something else delicious instead, something with blood oranges. And chocolate beignets. Mmmm. Mark, clairvoyant as usual, said, “They’ll probably make us up a little bag of those marshmallows for our flight home.” Well, who should come knocking on our door tonight, but Olena, with two plates of dessert: 12 passion fruit marshmallows, passion fruit sorbet, a mini passion fruit cupcake, and a large marshmallow blob covered in candied pistachios! In the center was a ribbon of chocolate with the words “Fondest Wishes” in icing script. I tell you people, we are going to miss this treatment!

Olena, with the tasty passion fruit marshmallows!

I’m so glad we decided to stay a couple extra days. Yesterday Ben was definitely not ready physically to tackle a day of travel across the country. (We spent a lovely afternoon with cousin Hana and her husband Ira who live nearby in a suburb of Philadelphia.) But tomorrow will be easier for him. We will dose him up heavily with pain meds and hopefully the trip will be easy for him. We fly from Philadelphia to Phoenix and then Phoenix to Oakland. A wheelchair will meet us at the curb and take us to the gate. The break in the middle will give him a chance to stretch his legs, a good thing. My sister, Mara, will pick us up at the airport and drive us home. Thank you, Mara!!! The boys and my mom will be waiting for us in Sebastopol…everyone is looking forward to the reunion.

Hana, Ira, Ben and me

And soon enough this will all be just a memory.

But, we’ll be back, for our second Wow Story. And amazingly enough, we’re looking forward to it.

The inside story

Philadelphia is obviously sick of the snow. Yesterday the weather reports had people in quite the tizzy with the forecast of another approaching snowstorm. Today the markets are apparently cleared of milk, bread, eggs, and cheese, the schools are closing early, and the game shows are interrupted with news flashes about the weather, but here in our cozy, golden room on the 17th floor of the Ritz the flakes flutter down past our windows and nothing is sticking to the ground outside. And nothing much is bothering us.

I don’t feel any sense of urgency or panic. We’ve crossed the threshold and are on the other side. Ben, Mark and Grandma Joyce sit happily huddled around the ottoman playing cards, a game called 7-27. They all are numbers people. Not me. I’m a words person, as you might have guessed.

However, I’ll share some numbers with you today, numbers which are making us pretty happy, overall.

We went in for our follow-up appointment with Dr. Cahill this morning. He gave Ben the go ahead to return home. More on that later. We looked at x-rays and compared the day of surgery (35 degree thoracolumbar curve)

to two days after (down to 12 degrees!).

I thought you might want to see his new hardware.

5 staples and a hybrid adjustable rod,

which you can see is attached in 4 places,

on 1 lumbar vertebra and 3 ribs.

He is now required to wear the protective brace every day for the next six weeks, but not at night. Following that he’ll need to wear it whenever he participates in activities which would entail twisting, turning and bending. This will hold true for the first 6 months following surgery. His activities are not limited except for a prohibition on all contact sports, bungee cord jumping, parachuting, rock climbing, motorcycling, trampolining, and jumping on horseback…until the rod comes out. (It would figure that Ben has all of those sports on his personal “to do” list. Well, he’ll just have to wait!)

His first lengthening will be in six months (September) and will entail a trip to Philly, a short surgery and a night in hospital. The distance makes it a bigger ordeal, but we will get used to it.

We talked with Dr. Cahill about long-term planning for the rod. It is possible that Ben will have to have more than three lengthenings and even possible that he’ll need a second rod. We are in uncharted territory. That’s how new this technique is. But, as you can see, it’s accomplishing quite a bit, getting a straight spine in a way that a brace never would have done. The day of surgery Dr. Betz (the chief of staff and the innovator of these techniques) was concerned about his thoracic curve and talked about possible fusion in the future. Looking at his x-ray post-op I’d say it looks quite a bit straighter. Time will tell.

Our plans now are to leave on Monday. We have tickets to return on both Saturday and Monday. Mark would love us to leave on Saturday, but that is in keeping with his desire to be home, be done with it all. And his typical disconnect with pain. (One day I’ll tell you about the time he broke his elbow playing racquetball and continued to play for a couple hours and didn’t even go to the hospital until the next day. Uh-huh.) I am of a more cautious nature and I just don’t want to push it. And, might I add, I’m the MAMA. Yesterday Ben went with only Advil for pain management all day, but by evening was in such pain that it was hard to go to sleep and woke him several hours later. It took an hour to soothe him back to sleep (with Valium and Hydrocodone on top of his Advil). With the snow coming in today and lasting through Saturday, travel feels dicey enough. We gave Ben the choice and looking at the sheer number of hours he’d need to sit up without a break (about 12), he decided to be cautious as well.

Grandma Joyce came to visit us yesterday from New York and is going home shortly in an attempt to outrun the storm. She brought homemade brownies and a deck of cards, an overnight bag and lots of enthusiasm.

She and Ben played cards while Mark and I went for a stroll through Philadelphia. (We found a sweet little neighborhood called Rittenhouse Square and two cool yarn stores. Not that I needed more yarn, but Mark made me go in and increase my stash…really!) We had a slumber party in our hotel room last night (not that we got much sleep) and she was waiting for us here when we returned from the hospital this afternoon. It was good for all of us to have her here, and especially good for her to see Ben in such great shape.

So, four more nights in Philadelphia. As Grandma says, if you have to be stuck in a place this is not a bad place to be stuck. A few more days of take out. A few more days of game shows, Olympics, and cartoons. A few more days of doormen, maid service and solicitous hotel employees. Then we’ll head back to California, brothers, animals, and our whole network of friends and family.

Our boy goes straight to the TOP

There are so many folks here at the RC who are making our stay more than comfortable and more than special. One of them is Dan, one of the concierges, who is such a sweetie. He refers to Ben as Mr. President and he seems to have taken a liking to our boy.

Dan's a young guy with a big smile and a great energy about him. He checks in on us daily at least a couple times to make sure our needs are met. Yesterday evening Ben developed a yen for sweet potato fries and when I went down to Dan's desk to ask if he had any recommendations in the neighborhood, he said, "I'll get on that!" Within minutes he'd arranged with the chef at the fabulous 10Arts restaurant (in the hotel) to specially make some for Ben. "Just call down there and say 'sweet potato fries' and they'll take care of you," Dan said.  

So we did, and added a Banana Creme Brulee to round out the order. Not a bad first room service dinner, eh?

Yesterday, Dan checked with me to make sure Ben was going to be free today in the morning. He told me that he had something up his sleeve, something he'd been conjuring up especially for Ben. Today we called down to his desk when Ben was up and ready to go, brought him down to the lobby, and off they went, just the two of them. They crossed the rainy thoroughfare of Market St. to visit the very top of City Hall's tower.

The building is steeped in history and the observation deck that they ascended is 500 ft above street level.

Atop the tower is a statue of William Penn which weighs 27 tons!!!

Ben came back with lots of information and rosy cheeks. Dan had wheeled him over in the wheelchair, but they'd walked and climbed stairs and hung out, just the two of them, for about an hour. Our boy is doing GREAT!

What a memorable excursion and a super treat.