Surgery the Sequel: Chapter Four

I was visited by a memory this morning. It swooped in on me as I trudged up the stairs after feeding the equines and cleaning the pasture, kicking off my boots in the mudroom, and padding past Ben and Toby sitting on a window seat happily engrossed in a game of Magic: The Gathering.

The memory is this: I am sitting on our cushy love seat, Toby tucked in close on one side, Ben on the other. It is the day after Ben has finally, FINALLY come home from the hospital after having four surgeries for Chiari I malformation, two months to the day since the first surgery took place. I am feeling that I never ever want to be away from my children. I want to keep them home, next to me, safe. Whatever it takes.

Deja vu.

Ben is home again, and he is almost pain-free. He appears lighter in body and spirit. He is calm and even. Happy, considerate, grateful, mellow. He has focused on Toby and playing with Toby all day, much to Toby's intense happiness. The baby brother really REALLY missed the older one.

Driving Ben home from the airport last night we talked about being apart from each other while he was in Philly. "I'm going with you next time," I said.

Silence.

"Weeeeell, I don't think so, Mama," Ben said. "Daddy can move me, help me get up, reposition me," he paused, "I really need him for surgeries...and he doesn't mind helping me pee into a bottle."

Well huh. I protested a bit. ("I don't mind helping with the pee bottle!") But, I guess I can handle this.

I just want everyone to know that we're all lighter here today. We're at peace because our Benny is doing so well. Mark's coming home early from work, it's Make-Your-Own-Burrito night for dinner, and the piles of dirty laundry are scattered in front of the laundry room door. Life is getting back to normal.

But next time (9 months from now, according to Ben's surgeon), next time I'm going with him. (Anyone know of a place that I can order an extra large duffle bag from?)

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.

The Kindness of Strangers...and others

I must have a look on my face right now. Gray clouds, lines of worry on my brow. A complete and total stranger asked me if I would like a hug just a moment ago.

Picking up a travel game and a cup of iced coffee at a local book store I was asked by the man behind the cash register how I was doing and, of course, I told the truth, never one to just say “Fine” and be done with it.

“Oh, it’s a challenging day,” I said, darkly, I suppose.

“What’s going on?” He asked me. And I told him.

“My son’s having surgery at the end of the week and it’s just difficult leading up to it,” I said. Wondering why I was sharing with a total stranger. What’s the point, really?

Turns out his nephew had three surgeries for scoliosis as a young child and is doing great now. He passed me my iced coffee. “Well, I hope it all works out for your son,” he said.

“It will,” I assured him/me. “It’s just difficult as it all comes bearing down,” I ended. I turned away, moving towards the side counter to add cream and pop on a cover.

He looked at me over the espresson machine on the other side of the counter. “Do you want a hug?” he asked.

Wow.

I turned him down with a smile, knowing I will soon be amongst some of my best friends at a homeschool park day and then later on the couch at our therapist’s office. It’s a day of many hugs both virtual and actual. Thankfully.

It’s Tuesday, just one day before Ben and Mark take off for Philadelphia. In less than a week Ben’s surgery will be over and he will be feeling fine, most likely. But the lead up, the waiting, the uncomfortable expectation is so difficult for all of us. This morning Ben’s first words to me after arising from bed were, “I don’t feel good.”

“What’s up?” I asked knowing it could be therapist-itis, post-playdate exhaustion, or pre-surgery blues. It was the latter. “I want a different back,” he said.

Poor guy. It’s hard to shake those blues.

The good news is I was able to arrange with the chef at Sur la Table to rearrange her curriculum to accommodate Ben’s schedule so he could take make up classes today and tomorrow (having missed two days of cooking camp a couple weeks ago due to a cold) before leaving on his journey. I dropped him off this morning in the store’s kitchen where he stood shyly eyeing the pretty teenage girls on the other side of the table as well as the pasta machines piled on the class’s work tables. “Good food and women,” I overheard him telling some friends the other day, “that’s all I need!” I predict his needs will get met this morning.

I haven’t done a very good job of predicting our needs presurgery with these most recent two. Of course, when he had his brain surgery four and a half years ago it all happened so fast I didn’t have time to prepare us. Boom, bang, bop. It was upon us. But this time and the last I had months to mark off the calendar or think about what we’d need and be going through.

As it happened, I was off the mark repeatedly. For the surgery in February I had no clue that in the two weeks leading up to the surgery I would be a germ’s worst nightmare and an absolute freak on an antibacterial crusade. We had all sorts of plans, all ultimately cancelled, during that time period that involved sitting in crowded theaters with hundreds of coughing, innocent but germ-infested citizens, or playdates with children with runny noses. I didn’t even contemplate all the germs we’d potentially encounter on the plane flight back east or the train ride from NY to Philly. It’s amazing we survived without mishap.

This time we had to take a surgery date that conflicted with a camping trip with other homeschoolers in Yosemite. I thought, “Great, one parent will go with Ben, one with the other boys.” Neat and tidy. He picked Mark to join him (“Mom’s my emotion parent, Dad’s my hospital parent.” Logical enough.) and so that was that. I was going to Yosemite. But as the time has approached not only have I grappled with the anxiety that is rolling over me about not being near him while he’s in surgery, but I realized that I will not be sleeping a lot while he’s gone, that I’d have to be focused on getting the rest of us packed up for a challenging camping trip at 9000 feet, and that once I’m in Yosemite I would be out of cell range and unable to talk to him. Clearly, this was not going to work.

I’ve rearranged things now so that Harry will be going on the trip with my good friend Laura and her son, Harry’s friend Wyatt. He’ll get the forest time he needs, attending Yosemite Institute naturalist programming for four days, surrounded by our homeschool friends the whole time. Toby and I have chosen to stay back, close to the phone, our critters and our burgeoning garden. We’ll be spending some happy and distracting time in Santa Cruz with my sister-in-law Sharon and her husband, Alan, as well. No one questioned my last minute change of plans. In fact, all of my friends agreed I was making the right decision. But the stress is much reduced.

I got an email last week from my pen-pal Rona, my emissary of immense good will from Philadelphia. Rona contacted me about a week after we’d returned from Philly in March. The mother of our beloved Dan the concierge, she had read my whole blog (Hi Rona, I know you’re reading this!!) and heard all about us and offered not only her friendship but her love and care of our family. She told me that their family was our adopted Philadelphia family and we embraced her right back. She and her husband will be taking Ben and Mark around Philly on Thursday for a (distracting and) fun tour of their city. I’m just sorry to miss the meeting.

So we are embraced. Embraced at the cash register at Copperfield’s Books, embraced by the cooking teacher at Sur la Table, embraced by our friends and relatives, original and adopted.

I’ll keep you posted.

p.s. I apologize for the lack of photos of late. Having some major technical difficulties here in my house full of IT personnel. Hope to have things ironed out in a week or two.

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.

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!!!

*******

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.

The snow fell on Philadelphia as I walked from the subway station to the hospital this morning. It was seriously cold but it invigorated me. Arriving at the PICU (pediatric intensive care unit) I found all quiet and calm. Both Mark and Ben had had a better night’s sleep than the night before. Ben was in a chair, having already had his chest tube removed. Through the day, as he rested or watched tv Mark and I sat quietly by. It was surprisingly low key, nothing like our previous experience in hospital. And, mind you, I’m not complaining. The approaching menace of the surgery is passed. We made it through with flying colors (I imagine Ben would be of a different opinion).

This is all good. I’d much rather sit quietly in Ben’s hospital room than outside the OR worrying about what’s happening. As we sit patiently allowing him to recover from the injury inflicted on him yesterday (all in the name of a straight spine) things are quiet and calm and drama-free.

At the moment (5:30 pm), Ben sleeps in his bed, hooked up to all manner of tube and machine. One tube has blood in it and I tentatively asked his nurse, Ephraim, what that was for. It’s a drainage tube coming from one of his surgical sites, keeping the fluid pressure down in that area. Or something like that. [My understanding of all things medical is limited and sometimes the information I get starts to overwhelm me. So I nod (as long as it seems like just a case of TMI—too much information) and allow it to wash over me. I tend to faint in hospitals so I monitor internally and closely my reactions to the words, sounds, and sights here. I make sure I’m not starting to feel the blood rush away from my head in a panic. Unfortunately, having had way too much time in the hospital with poor old Ben, I’m getting very good at managing this and so far…not to jinx myself or anything…so good.]

Ben has several IVs, a blood pressure cuff, and monitors for his heart, oxygen, etc. I honestly don’t know what it’s all for. I take in the quiet beeps and buzzes, watch the screens posting numbers; 90, 17, 95, 114/61, and I knit and write. Mark reads or watches the tv. Ben sleeps. Now and then someone official comes in to adjust something or take a reading. It's startlingly peaceful.

This PICU is so nice. We are cocooned in our room, large glass doors and a curtain separating us from the typical hubbub of a busy PICU. This PICU is not busy at all, however, the product of a very controlled surgical program at Shriners. The nurses are lovely, every one. And Ben has two! Haven’t met one I didn’t like. They are gentle and firm, confident but not bossy. They all are so friendly, calling a cab for me last night (that never arrived!) or urging Ben to take a deeper breath or blow out harder with his lung exercisers, chatting with me about horses and donkeys or helping him to move from bed to chair.

Slowly, my boy emerges. You would not have recognized Ben for most of the day. It wasn’t the tubes and the compression stockings or the hospital gown. It was his personality. For the most part, he’s not speaking and rarely letting out a smile. He’s turned down offers of read alouds, YouTube, and Discovery Channel in favor of silently watching Sesame Street, PBS kiddie shows, Sponge Bob, or the Olympics. These shows require less from him and must be more soothing. But as time passes things improve. Every hour there is some sign of progress, a giggle or a small smile. He had his urinary catheter removed a couple hours ago and later walked down the hall. Those are BIG deals.

It’s understandable. The pain, the morphine, a low grade fever add up to some serious malaise. We expect him to feel lousy for a few days. But the folks here still expect us to go home near the end of the week. It’s only Tuesday and that’s entirely possible.

Mark and I are doing fine, thanks for asking! (I’m not kidding…many people have mentioned the importance of caring for ourselves. We are, don’t you worry.) It helps that he’s getting terrific care. And it helps that each night I’m able to get back to a stress-free environment to sleep in. Mark has an amazing capacity to get sleep in the most challenging situations. The beeps and noise of the PICU tend not to get in the way of his zzzz’s. I imagine he’ll get still more tonight.

Now the clouds have broken and there’s an evening’s lavender sky showing through. I probably won’t stay late tonight, the trouble getting cabs is getting to me, and I enjoyed taking the subway (aren’t I the big city girl now?). We hope tomorrow will bring us a stronger, happier Ben. Keep the prayers and blessings coming.

Just a note before bed...

Did I tell you this? When Dr. Cahill came into the parent lounge to talk to me and Mark after the surgery was over, I was sacked out on my chair, head on my balled up jacket, drooling. When I awoke I was so embarrassed...wiping the spittle off my chin! "Sorry...I'm so beat!" I explained. But then I realized who I was talking to...the man who'd been working on my son's spine for the past nine hours. "You must be exhausted," I added. "Not at all," he said. "I'm totally energized. Things went so well!" How's that for instilling confidence in your surgeon?

Ben looked pale and ill when we got to the PICU. Tubes coming out of everywhere. He whimpered with every breath and cried that everything hurt. Being the only child in the ward has its advantages and the nurses there are wonderful, gentle, calm, and knowledgeable. He asked to be adjusted over and over. Nothing felt comfortable. And honestly, it was hard for me to imagine a position that might work knowing he had two incisions on his back, several on this side, and a chest tube in his ribs. "On my side." "On my back." "Up a little." "Down." Many times he mumbled something I couldn't quite catch. "Do you want to go onto your back?" I asked, fairly incredulous. "No," said he, in a hoarse whisper, "the dragons are there."

Oh my poor Benny. The dragons.

It took some time for the morphine to kick in, but once it did (they also added Toradol to the recipe), he settled down to a more peaceful state. I stayed for an hour or so, but then Mark sent me back to the hotel. (Mark does hospital much better than I.)

It was snowing big puffy flakes by the time I got back to the hotel. I was craving a latte, something warm and familiar. So I went in (greeting all the lovely employees who always seem so happy to see me), dropped my backpack and bag of knitting in my room, grabbed a few bucks and walked across the street to Borders. Every Philadelphian I've met has said to me, "Enough SNOW!" They are so done with the snow which is crippling the city, closing off streets, slowing traffic. It's common to see cars completely snowed in on every street. I don't know how people get to work! But, for this California girl, the snow was glorious. I felt so high and happy, knowing my boy was "on the other side" as one of my friends from the VBS forum said. I'm sure I had a HUGE smile on my face as the snowflakes fluttered down onto me.

Tomorrow may prove to be challenging due to pain. But Dr. Cahill is hoping to be able to remove the chest tube early in the morning. And after that we should see a lot of improvement.

I will fill you in as much as possible. Thank you so much for all your love and support, blessings and prayers. They mean so much to each of us.

The royal treatment

How do you make a boy feel like a prince?

When he arrives at the door of your hotel, the Ritz-Carlton, you get VERY excited when you find out who he is.
You and EVERYone working in the lobby knows his name and makes sure to greet him with an ear to ear smile.
You say, "We've been waiting to meet you!"
You offer him treats from a wagon of silly kid stuff, and when he declines (politely) you offer him a movie, which he accepts.
You bring him a sparkling cider in a champagne flute and a glass of the bubbly (the real kind) for his mom.
You, the general manager, come out to meet him as he arrives and shake his hand telling him to let you know if there's anything he needs.
You arrange a huge room for him and his parents with three luxurious beds, a marble bath, and a pretty city view.

You know his name, no matter who you are in the hotel, you seem to have heard about him...he is practically royalty.
You are thrilled to help him find a great restaurant for dinner.
You happily hand over a packet of maps and other things specially prepared for him to help him have fun while he's here.

And you give him the opportunity to take a relaxing bubble bath the night before he checks into the hospital...

It doesn't get much better than this.

Thank you, Barbara. What an incredible treat this is.

The last post before we leave on our journey to Philadelphia

It has been both a whirlwind and an interminable wait. At a time when we could have appreciated smooth sailing, nothing seemed to go right. (And between performing a mind-dump of every detail of our lives--for Harry and Toby's caretakers--and shopping for yarn for my projects on the road, I had not a minute left over to update here!)

We suffered a ridiculous amount of mechanical failure: the computer, big truck and washing machine all died in the space of a week, causing Mark to spend an inordinate amount of time fixing, fixing, and installing (new laptop, new washing machine). Thankfully he’s good at that…but it’s not like he had much in the way of free time. So, realistically, other things he wanted and needed to accomplish did not get done.

I had no idea how paranoid and nutsy I’d get about germs in our environment but as soon as we hit the two-weeks-before-surgery mark I went on the warpath. Every germ in our way was a threat. This, of course, eventually led to a paranoid freak out of the worst kind. Ben, particularly, has not left the house much except to visit friends who are symptom free. And, when he has sneezed a few times…it stops me in my tracks. If he gets any kind of respiratory infection before surgery it will have to be canceled. This CAN NOT HAPPEN.

So, I’ve been plying everyone with large doses of Vitamins C and D and Airborne. I require everyone take frequent trips to the bathroom to wash their hands. We’ve tried out a variety of hand sanitizers and love this one made by our friend Jenny Mountjoy. I won’t tell you how we’re doing (superstious) until we’ve checked Ben into the hospital.

Oh, and speaking of “nothing seemed to go right” in the middle of all this Mark got food poisoning and had to miss our blessing circle last week. Oy.

On the other hand, much has proven to be just as I know it is: through times of hardship the silver lining always shows. Our community of friends and family rallies around us with the best kind of care. We are being given food, playdates, rides to and fro, gifts of all kinds, even a housecleaner’s services, and, of course, HUGS (from the germ free folks!). We have a support network set up, which you can join if you'd like: Ben's Friends. Our friend Barbara got us a fabulous discounted reservation at the Ritz-Carlton in Philadelphia (that's it, over there on the left)! We will be pampered and well cared for, don’t you worry.

Our current schedule is:

• Depart Sebastopol at 8:30 am tomorrow.
• Fly out of SFO at about 1 pm nonstop to NY.
• Stay two nights at Grandma Joyce’s house.
• Saturday, drive down to Philadelphia (which is currently experiencing a blizzard!!) and check into the Ritz.
• Sunday, check Ben into the hospital at noon.
• Monday, surgery at 7:30 am.

We will be at the hotel for our entire stay in Philadelphia and we will come home to CA directly, without a stop back in NY on either February 27 or March 1, depending on how Ben is doing. We decided that this would be best for our whole family and Ben will be fine to travel several days after his follow-up appointment. We’ll play the medical card at the airport, anyways, getting a wheelchair or other transport, so that he won’t have to be stressed by the day.

Many of you are asking how the boys are doing and I'll say that they are managing. There have been millions of melt-downs and hours of TV escapism. All of that is fine and to be expected. Toby asks every day when we are leaving and I spend extra time tucking him in at night. Harry's created a set up for Mark and me to record our good-night songs for Toby and has installed them on his iPod along with recordings of us reading some favorite books. He'll be able to listen to them at bedtime while we're gone. Harry has stepped up to the plate and is being remarkably mature about the whole thing, including taking the utmost responsibility for his junior college coursework and getting up early to feed the equines and clean up their environment. Ben has had a lot of trouble sleeping, so I have been sharing our guest room with him for a few days. The proximity of his warm (and most likely, snoring) mama has made it possible for him to get a good night's sleep. And it's been great for me, too, I'll admit. Proximity is very important.

And now to the millions of last minute details, packing, hugging my boys, and checking my lists twice, three times, and again...

Thank you to all of you who have come to our aid. While the world at large seems often to be in a state of tremendous despair, I feel so fortunate to know that my own little world is full of love, connection, and the confidence that we are doing the right thing, as difficult as it feels every moment. We are wrapped in a blanket of your love and support. You hold us up and help us to breathe through the most challenging moments. We couldn’t do this without you.

Blessings to you!