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.

Can you say "Ahhhhhh"?

The change is palpable. I felt the difference from the moment we left home: a sense of release because we were finally on our way, finally done waiting for that moment to arrive.

I sit now in Grandma Joyce’s living room listening to the tinkle of Ben’s laughter coming from the kitchen where he and Mark complete a crossword puzzle. There’s been a lightness in Ben these past 24+ hours that I haven’t seen in weeks. Even though his VBS/Hybrid rod surgery is still looming, we are all feeling a sense of ease about it now. It’s not just inevitable, it’s the best option for us and we’re here, we’re going through with it, nothing’s standing in our way. Not snowstorms or germs or anything.

Yesterday morning, as I collected the last minute items for our trip, I watched Harry and Ben hugging in the kitchen. Ben burst into tears, sobbing, “I don’t want to go have surgery!” and Harry held him tightly, bestowing a big brother bear hug he’s obviously been perfecting. It was a moment that I appreciated all the more after the squabbling and lashing out of the night before.

Sherry and her kids arrived to stay with Harry and Toby for the next couple days, Deborah arrived to drive us to the airport. (Friends have been “showing up” for us in so many ways lately. This is the golden light. This is the silver lining.)

The urge to move forward helped us be timely. Group hugs on the porch led to good-bye waves from the boys and friends we were leaving behind. We stuffed our immense luggage into Deborah’s little car and were on our way.

(The boys at home have checked in with us periodically since then. It was clearly a harder transition for them since they stayed behind, as my friend Sherry noted. But even for them, there was relief in finally getting through the moment we’d all been dreading. The line between Before They Leave For Surgery and After They’ve Left For Surgery had finally been crossed.)

In a nutshell, our travel day was smooth and the mood light. We arrived at the airport, unloaded our luggage (and payed the extra $30 for our 4th bag!), grabbed some brunch (Ben had “the best orange chicken” he’s EVER had!), headed to a quiet, unpopulated corner of the waiting area and disinfected it with our anti-bacterial wipes before “plugging in” to our technology. We’d talked about wearing sterilized masks for the whole day to stave off the unbelievable amount of germs that must be lurking there in every corner, but I chickened out once we arrived at the airport, feeling self-conscious. You know me, fashion over cleanliness, right?

Well, once we boarded the plane Mark and Ben donned the masks like good little patients. Mark’s philosophy: “Wearing the masks is good for two reasons, it makes people think you’re crazy or you have a contagious disease. Either way they avoid you.” No one sitting near us was hacking or sneezing, a plus. We disinfected our armrests and tray tables and our hands frequently, and keep popping the vitamins.

I surrounded myself with knitting while keeping one eye on the little TV screen on the back of the seat in front of me. My knitting project plans have been keeping me distracted, if not happy, while preparing for this trip. I brought along about seven Ziploc bags of yarn for a variety of projects AND ordered more yarn to be delivered to the hotel while I’m there AND have already scoped out the yarn stores near the hotel for those slow days after Ben’s been released from the hospital and is busily playing video games in the hotel room, I mean, recovering. My obsession with knitting is not a cause for alarm, it is still harmless, I believe. Like any of my crafty endeavors, I find the process totally absorbing and diverting. The knitting itself is meditative, just the thing when your sweet one is in surgery or recovering. And as the garment emerges, a soft pool of color in my hands, I get a tremendous sense of satisfaction. There’s really nothing else like it. Keeps my mind and hands busy and produces something beautiful in the end. Projects started: ice blue sweater, jewel tone beanie, blue scarf. Projects waiting in the wings: blue and yellow baby hat, fuzzy blue fingerless mitts, black and pink fingerless mitts, blue vest…and more.

Arriving in NYC, driving to Grandma’s house, we could see the piles of snow everywhere. For Ben and me, this was a first, as Ben says, to see so much snow in a populated area.

We couldn’t wait to get outside this morning to take a walk. The weather is cold, but not bitter. We were so lucky to have missed the blizzard that hit the day before we arrived! Sun was out and the snow was glorious still, not that ugly gray slush you get in a city after a big snow.

At one point, Ben trudged into the middle of Grandma’s front lawn and announced, “I’m going to make a snow angel!” at which point he flomped down, face first in the snow. “Ben. Most people make snow angels on their backs!” Mark informed him. “Oh.” And he righted himself immediately.

There’s something to be said for giving yourself extra time. Having planned to arrive a few days early to allow for weather issues meant we had time today for a late wake up, a walk through the snowy neighborhood, snow angels, snowmen, and snowball fights. Ben spent the late afternoon building a snow fort in the backyard, directing Mark to go upstairs to open the window and snag the best and longest icicles from the roofline.

At 5 pm we sent Grandma off to our great niece’s baby naming ceremony in Scarsdale. We were sorry to have missed it and would have gone, but being as crazed about germ exposure as we are right now, we decided to pass and stayed home to have a quiet pizza dinner from our favorite pizza parlor in New Hyde Park, Umberto’s.

When Ben came in from his snow extravaganza and had changed into snuggly warm sweats, the three of us sat down and listened to a guided meditation recording called “Preparing for a Successful Surgery” which Ben deemed boring and irritating, but what can I say, I got very relaxed!

Throughout this whole year we’ve been avid participants in an online forum for the parents of VBS patients. From that web source we found out about the technique and the amazing doctors at Shriners. Coincidently, one of the forums’ founders is a mom who lives with her family not far from Grandma Joyce, so tonight she and her 11 year old son David came over for dinner (I made sure they were, in fact, germ free!) and it was wonderful to chat and get to know them better.

Maria is petite and funny, with a strong side to her that is a model for me. (Mark says she’s a real New Yorker.) She is someone who gets what she wants, especially when it means the best for her kids. David, like Ben, had his scoliosis diagnosed first which then led to the diagnosis for Chiari. He was only an infant at the time! He had his VBS surgery several years ago, he was one of the earliest patients. And Maria is now a vocal advocate for Shriners and the techniques they innovate there for scoliosis patients. We had a great evening with our online friends. It was just like the rest of the day, positive, light and full of laughter.

Tomorrow we will head to Philadelphia where we’ll check into our ritzy digs.

More then…

and now for some scenes from our snowy day...

On with the show

It's still dark out, but I'm up and wish the day would get going. The house is quiet. Everyone else is still asleep. Peace.

Last night was rough. The boys were all near tears or in tears throughout dinner and beyond. The fighting barely stopped. Ben ended up running off to sob into his pillow, leaving it tear-stained (he showed me) when he finally slowed down enough to talk to me.

The packing went fine except for those last few details. There's something traumatic about deciding what to take on the plane. One book? Two? Hardcover? Paperback? Two knitting projects? Three? Sweater? Jacket? (It's freezing in East, don't forget!) The technology alone is ridiculous. Between the three of us we have three laptops, two iPhones, one iPod, a camera, and a huge tangle of headphones, cables, and chargers. I packed two small bottles of hand sanitizer, a bag of face masks (yes, I'll have to take pictures of us in them), and a bag of anti-bacterial wipes for our tray tables, armrests and the bathroom door handles.

Transitions are so difficult. Harry expressed it something like this: "No offense, but I look forward to when you're finally gone." Meaning, I hope, that the waiting is beyond excruciating. For each of us. And as much as we are not looking forward to the surgery, enough with the anticipation!

Bedtime was a bit earlier than usual. 10:45pm. Toby and I shared the big bed upstairs last night. I read to him and then we snuggled until we both fell asleep. Ben refused to sleep with Mark at first ("He SNORES!") and understood that Toby needed me for our last night at home. But, in the middle of the night, I heard him pad up to the booknook to ask Daddy to join him, after all. Snoring aside, it's good to have bedtime company when you're anxious.

Monday I took Ben to get a massage from my friend Liz. It was his first one and he LOVED it. It felt right to give him this, knowing what he will be experiencing in just a week. Afterwards, when he'd gone out to the car to wait, I told her how glad I was that he'd had the chance for someone to touch his skin in such a healing and gentle way. I started to cry as I told her that the part of the surgery that's really getting to me right now is the fact of the cutting into his sweet, beautiful flesh. It hurt me to think of it. This is what she said: "Susie, a client of mine came in the other day. He has scoliosis and his body is twisted and distorted. He is in constant pain. Never doubt that you are doing the right thing for Ben."

And so we go. On with the show!

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!

Words I finally found the time to write, at midnight

You don’t notice what is going on. Things just unfold. Unravel. Pull a tail of yarn and watch the whole thing unknit, loop after loop, hours of work reduced to a tangled pile of kinked yarn. An opportunity. A story untold.

Harry fell apart tonight. He’d been a grump all day, except during his ballroom dancing class, but tonight he had a flare up with Ben which devolved into a screaming match with Mark, which devolved into tears and rage and pain. I’ve been saying how Harry’s been handling it the best of any of us. Strong and even-keel. What was I thinking? Of course he was burying it until his storage cell was full to bursting. This is his way. No one has asked how he’s doing, he said. No one seems to care if he’s alright or not.

Ben fell apart yesterday. Long rainy hours spent curled under a blanket on the window seat watching the clouds, the beginning of a new storm. And finally one question from me and the tears, the real sobbing, the unfairness of it all rushing forward, like the floodwaters. Those gray and heavy clouds don’t help his mood. It’s so hard to wait. The anticipation is a deep agony he’s feeling. I’m feeling.

Toby calls me to him every morning as I tromp to the front door in my mucky boots, on my way to feed the animals and clean the pasture. “Mama, come sit with me.” I put him off until I return. And then I sit on the edge of his “bed,” our sofa, where he’s recently taken up residence. At night, after Mark read him a chapter of his book and sings him a playlist of favorite nighttime songs, he still calls to me. “Mama, come down here. I need to talk to you.”

Sometimes I have to push Mark away. He asks for me to be there with him in those blank moments at the break of day when I’m finally, fully in the depths of sleep. He cuddles and nudges me to the surface for his attention time. I am most cruel to him then, but sometimes I can catch myself. He needs me, too. We need me.

Lately, I drag myself away from whatever I’m trying to accomplish, my to do list for tomorrow, sleep, a snack, an email, my knitting, a distraction. “Ok, in a sec,” I say. I could just say no, I’m busy, and sometimes I do actually tell them all, “I need time for me.” But right now me-time seems to be far down the list, as much as I attempt to push it to the top, like a mother dolphin pushes her baby up to the air, I push myself and my needs up to breathe.