Retreat

A few weeks ago I asked the Universe (alright, Facebook) for a place to go on a writing retreat. "Universe," I says, says I, "I want to go on a personal writing retreat, somewhere beautiful, somewhere peaceful, somewhere cheap---I have no extra funds for this, Universe---preferably with a hot tub." And, what can I tell you, but the Universe provided. 

My friend Jenny, the maven behind Dolce Mia bath products, offered me her beautiful home for this past weekend. She and her brood were going to visit her oldest offspring at college and she could use a housesitter to keep the bunny and kitty company. Truth be told, she has a renter on the property in another building, who could handle it, so I think she was just sweet to let me stay there. And I fell in love with the bunny, Truman. He was like chocolate smoke velvet. And very quiet. Unlike the cat, Buttons, who was the whiniest cat I've ever met. But a sweet character, nonetheless.

I was supposed to go on Thursday after dropping Toby at his D&D game, which my friend Elizabeth kindly hosted so that I could get out of the house faster, but I had a really bad cold and ended up sick in bed until Friday night. Saturday morning I filled in at the synagogue leading music at a bat mitzvah because our cantor's wife just had a baby, but then I shot home, repacked, and headed to Jenny's place, laden with food, laptop, jammies, notebooks, cell phone charger, and my favorite tea.

There is something uncanny about being out of your normal environment to inspire productivity. Almost as soon as my freezer bag was unpacked into her freezer, I set up my laptop and Go! was on my way.

I almost forgot to tell you, I'm writing a book. If you've been following this blog (yes, you 18 official followers and you 5,972 lurkers who don't want to be pinned down or give me the pleasure of knowing you're really there and I can count on you *sniff*) you've read some of it. It's going to be my Ben story. Parenting and living and surviving the challenges we've faced. Overcoming it all too. Triumphing. It has a happy ending, as you know, since Ben is doing so incredibly well. And the therapist wasn't dead after all. Or even in bed the whole time.

I'm doing it on my own, though I've been reading a great book by Guy Kawasaki called APE (Author, Publisher, Entrepreneur) and another one called Your Big Beautiful Book Plan by Danielle LaPorte and Linda Sivertsen. The former is focused on self-publishing, the latter on getting a 6-figure book deal. That'd be nice. (No, really!) I'm also part of the APE group on Google+ which feels supportive, and hopefully helpful. I'm planning to join my local writer's club, Redwood Writers Club, for more connections, support, and advice. And then last night I took the plunge and joined WNFIN (Write NonFiction In November), sort of the nonfiction antidote to NaNoWriMo (National Novel Writing Month). I've got me some PLANS!

Anyways, back at Jenny's for those couple days I ultimately had I got into the zone and wrote for hours. I interspersed it with reading for hours, both of the above books. There's SO much to learn and so much to figure out about how I want to proceed with this process. But, luckily, so far I'm not getting too intimidated. I was really productive on this retreat and completed my introduction and began the first chapter.

And then Mark came over to make me dinner. His plan was to just cook, feed, and then curl up with a book while I kept writing. But I wanted his input, his ear. I wanted his memories. So for the rest of Sunday night I read aloud to him the pieces I'd written. (Read and cried, because I can't seem to get through these stories and memories without a lot of tears. And that's just fine, I'm coming off a long spell of holding it all together. I need to fall apart a bit. When my own words open me up, I'm okay with that.) As I sat at the computer, every so often I'd check in..."Hey, do you remember what that orthopedic surgeon said about Ben's first scoli x-ray?" and "Yeah, that's what I remember, too," or "Oh, thanks! I forgot he said that!" I am so grateful that I don't have to rely on just my memory to do this!

This is going to be the WHOLE story. From the beginning of Ben's brain surgeries. I wasn't blogging then, just sending out mass emails about his status. It hadn't become a thing, blogging, quite yet. But I've gone back and repeated the story a lot of times, and believe me...I remember a LOT of details. That kind of experience doesn't fade much. So, you'll be able to see a lot more about how we weathered that first storm in the book.

I need your help in a few ways:

1. Title? Any ideas?
2. Similar books that I should check out? I would say memoirs like Beautiful Boy by David Sheff and Operating Instructions by Anne Lamott. Others?
3. Audience? Tell me who you are so that I can get a better feel for who wants to read these stories.
4. Readers? If you're interested in reading early versions and giving me feedback I would love to know and put you on my list! (Crowdsourcing...Guy Kawasaki's really into that. And I think it's a great idea.)

I got 6500+ words down this first writing weekend. With November fast approaching and WNFIN starting, I should get even more done. Wouldn't it be amazing to have a book written in the next few months?

Reframing Fear

This post is a part of the Summit Blog Tour, which leads up to the Soul*Full Summit hosted by Catherine Just. I’m thrilled to be a part of an event that empowers entrepreneurs, artists and creatives to take action toward their dreams while helping create more opportunities for people with Down syndrome. You can join the movement by signing up for the Summit HERE.

* * * * * * *

The day before Ben and I left for Los Angeles for his big surgery I got together with some friends for a little blessing ritual. They held me physically and emotionally as we talked about what was coming. We sang, they gave me blessings, they hugged me, and sent me on my way.

All of the blessings were powerful and comforting. But there was one I called upon more than the others throughout our time in LA. I think I didn’t actually really believe it at first, but I kept it like a mantra, in the back of my head, and reflected on it whenever I needed a reminder.

“Please remember not to worry about Ben. There is nothing more focused and clear-minded than a patient with the mission to get well. The way is crystal clear, the path laid out. So, remember to allow him to heal himself and love him and offer support by continuing to love yourself...”

Susan’s message caused me to take a step back from Ben and do some observing. She was so, so right. My moments of stepping into his personal space with worry or fussing always caused him to push me right back out. He knew what he needed to get himself up and out of the hospital. He was very focused. And what he needed from me was to trust him, love him, and love myself.

Ben is doing so well these days, moving with ease, walking longer and farther, looking beautiful in his new tall, straight self. (We go back to LA for his 6-week follow up appointment on Monday and I’m sure he’ll get rave reviews.) I’m not worrying about his health these days. Now I have time to worry about everything else!

So I was a little surprised when Susan’s mantra came to me as I felt the fear rushing in around parenting my teens. I realized that what starts as fear becomes a tug-of-war between trust and control.  

F.E.A.R. Fear of everyone falling off the cliff if I don’t make sure they are all safe and sound. Fear of a car crash if they aren’t paying attention. Fear of lives or limbs lost because I haven’t done everything in my power to avert that disaster. Fear of all the things out of my control, heck, out of their control, that could happen.

If I frame it as “What we want for them,” it’s a bit more positive: We want them to be safe. We want them to thrive. We want them to be successful at whatever it is that they decide they want to do with themselves. We want them to be happy. We want them to find meaningful work. We want them to be able to be independent, live out in the world on their own and pay for the needs and luxuries that they choose to have. We want them to have confidence in their own abilities to move forward, to make life choices, to deal with the challenging situations, decisions and people that they will most definitely encounter. We want them to be good, responsible people, to have fulfilling lives.

I don’t need to conduct a poll to know that my fears are common ones. And my fears are just the contrasts of those wants: What if they aren’t successful? What if they never can leave home because they don’t make enough money to pay for a car, gas, apartment, food? What if they can’t find meaningful work, whether because they don’t make smart choices or because they can’t find their core? What if they don’t have self-confidence? What if they crumble or storm out every time life gets hard? What if they are unhappy and unfulfilled?

I can see what those fears are: my own personal anxieties talking loud and clear. When I look at my boys I see three good, strong, amazing people. Three smart, creative, and handsome guys. (I could go on...but I'll spare you ;) I know that how Mark and I have parented them has made an impact on them yesterday, today and tomorrow. I don’t know what their time frame is, but in moments of clarity I’m not afraid of them not finding their true north. Even if today they don’t know for sure what they want to do with themselves, can’t picture themselves as adults, or don’t behave like adults, that is just today while they are still becoming.

I also know: Shit happens. Look back at most of the posts in this blog. Of course I know that. You would think that I’ve learned that living in a place of fear does absolutely nothing to avert disaster. AND at the same time it doesn’t impact the future either. FEAR just makes you unhappy in the moment. It just takes away the joy and gratitude you could be feeling right now. It clouds your perception of your life so that all you see is this distant frightening Future...and Now is actually very dark. You can’t see it.

Parenting teens seems to bring this all rushing up to the surface. I think that parenting teens engages this fear in a bigger way than even parenting small, seemingly more fragile children. The teens are on the verge. The verge of blooming, launching themselves into the world. And as they start to spread their wings we feel our own insecurities aroused. Are they prepared? Are they smart enough? Are they going to handle it all well? Will they survive? Have we done enough?

It isn’t all about reflection, but it is about where our boundaries lie. Where I end and they begin…that line is so important in our relationship because when I can see it and hold it, I am honoring them as individuals.

The worst thing I do is step over the boundaries into their space and share my fears with them. It’s the worst thing because all it does is show them that I lack trust. They think it’s a lack of trust in them, and even I think it is for a while. But the longer I look at the fear, the more I realize that it’s actually my own lack of grounding in right now. I am someone who spends too much energy envisioning an apocalyptic future. A terrible, terrifying future.

Parenting teens well requires setting aside my own fears and worries and believing in “the patient” and that he will know what he needs, what he wants, and how to get it. Parenting teens well means sitting with the discomfort of today, including sitting with their discomfort when they don’t know what they want or how to get from point A (today) to point G (their future) and not doing anything about it. It is a tug-of-war between being content with not knowing and doing some planning, and being content with not knowing and not doing any planning!

The discomfort causes me to want to soothe it all away. And Soothing is doing so I start to work hard to come up with a plan, a healing path, an idea or list of ideas, a schedule. What I really need to do is be quiet and patient and see what comes. To trust in my kid to figure himself out.

So today I’m going to put my fears aside. I’m going to trust my sons to get themselves where they need to get. I’m going to keep on loving them, supporting them and loving myself. And, I'm going to focus on today and all the beauty each of my young men embodies. It’s a much sweeter place to be.

I Picture Him

I picture him lying in a bed, a hospital bed, incapacitated. His wife sits nearby. He is asleep or unable to speak, or move. His essence ebbing away.

I picture his little girl at school wondering what has happened to her vibrant, handsome dad.

I picture his older daughter making her way through her flour dusted restaurant kitchen, heart aching as she is about to lose another parent, too soon, too soon.

I picture his phone, laying dead amongst his belongings. On his dresser at home, or maybe his bedside table. The sheets are all in a jumble, the bed has not been made for weeks. The table top is dusty, evidence that no one has looked at it in days and days. His watch, some change, a business card with rubbed and curled edges, a bottle cap are also there. Nothing too important, just the detritus of a pocket in a pair of pants once worn around town.

The phone’s answering service says it’s full, no more room in the memory bank. The texts pile up, undelivered or delivered, it makes no difference if no one is reading them. His email account also is stacking up with unanswered emails from people wondering what happened to this man

Who used to sit across from them in a cozy office. Beautiful paintings on the wall, a soft throw on the back of the sofa. A hand-hewn coffee table with a speckled gray granite top against the wall behind him. He made that table with his own hands. Shelves line the west side, covered in baskets and boxes of little toys and trinkets, all set out neatly for play and processing in the sand tray nearby. I used to wonder if he dusted everything off frequently, if anyone ever played with them any more. I never did. Did my kids, when they were in there with him?

Where has he gone? Where is he? What are we to do when this man who has held our hands through some very tough times is suddenly gone. Poof. Not available, no sign of life. What are we to do with no answers, no definitives, no closure?

I see him everywhere. I can’t tell you how many tall, handsome men I’ve seen in the past few weeks who look just like him, remind me of him, hurt my heart with their close cropped hair, strong cheekbones, and lean frames. I wake in the night, every night and he is there in my head. I worry about him lying in the hospital bed, or worse, as dust in an urn. I worry that my last time connecting with him was a brief text about Ben, a few months ago. I worry that we have lost such a lovely soul.

And if he comes back, oh I’ll be mad. How dare you leave us like that? How dare you just be silent when I was so concerned. But boy, will this be fodder for the therapist’s couch. Where I go with my worries. Where I go with silence and no answers. I wish, I wish we could have that session. But god, I really don’t think we ever will.

Yes!

In the Jewish tradition, the new year is preceded by a month of preparation called Elul. It's a month to take stock and prepare for the two Biggies of the Jewish New Year, Rosh Hashanah and Yom Kippur. I believe you're supposed to make your apologies to those you've wronged, consider your missteps, think about your sins.

One day maybe I'll observe it, do it right. This year, though, I was distracted.

Rather than prepare for the High Holy Days, I was worrying about Ben's surgery, trying to breathe, and then watching him recover. That seemed like enough to occupy my consciousness.

On second thought, maybe that was my preparation.

With my anxiety about our MIA therapist, I was further distracted and dislocated from the Days of Awe. In fact, I was so fractured that up until I arrived at shul yesterday evening I wasn't even sure I wanted to be there.

And then a shift happened. Reb Irwin talked beautifully about longing and belonging (I recommend you read his sermon, he is so wise) his theme for these holy days. Everyone is longing for something and our people has a history of, in fact has made a cultural art form of, intense longing. Are we not the people longing for the Promised Land? Longing for freedom, for peace, for justice, and safety. He asked us to consider what we were longing for: was it love? a partner? some ease in our lives? He talked about what those longings signify: a lover = to be loved, money = safety, a good job = to be useful. He spoke of belonging, too...community, connection, feeling comfortable in our own skins. All of this resonated with me.

Today in services, Reb Irwin asked us what was something we'd longed for and then received...and what the upshot was. Was it worth all that longing? What were the lessons we learned?

This has been quite the year. Ben underwent five surgeries. I had a spiritual awakening. Toby began ballroom dancing and preparing for his Bar Mitzvah. Harry began to take the reins of his life more firmly in his hands. And Mark kept us all afloat.

I asked myself: What have I longed for?
I asked myself: What have I learned from my longings?

Calm. Health. Happy, productive boys. Connection with my husband. A feeling of being awake and alive. To be able to use my voice to move people spiritually. To have some ease in our lives, some room for silliness and fun and play. Relaxation. Motivation. Contribution.

This month of preparation for the Holy Days was a month of worrying and breathing. Longing and reminders to be present in the moment. To trust in myself as a mother to give solace to my child, to trust in my child to know how to move forward in his own life.

This afternoon, I stood on a bridge overlooking the Laguna de Santa Rosa on the edge of Sebastopol. Mark and I were there for Tashlich, a part of Rosh Hashanah, a metaphorical shedding of what is holding you back, keeping you from being your truest self. (Originally, I believe the practice symbolized tossing away your sins from the previous year, but we cast it in a somewhat different light.) We stood on the bridge and sang "The whole world is a very narrow bridge and the only thing is not to be afraid." We stood there and thought about our personal impediments to happiness and ease.

I asked myself: What do I want to shed? What do I need to shed? How can I belong more to myself than in this past year?

And what came to me were these three things: Worrying, Self-Doubt, and Lack of Trust in Others.

Yesterday afternoon I felt raw and disconnected. I felt myself spiraling into a place where I could not sing or meditate or stop perseverating about things out of my control. And then today I stood on a narrow bridge and cast seeds into the water saying: Goodbye worrying, Goodbye self-doubt, Goodbye lack of trust. I am done with you all. Get out of my way. I surrendered to where I know I have been and I resolved to let those weights sink into the waters of the laguna. Letting them go. Letting them go.

When I got home I felt relief. I truly felt lighter and happier than I'd felt in days. I went out on the deck to take some self-portraits and I twirled around and threw my hands in the air. YES! I felt YES and YES and YES.

I welcomed in the New Year with an open, lighter heart. Yes, 5774. Welcome.

L'shana tova u'metuka v'shalom. May we all be blessed with a year of happiness, health and peace.

Worry and surrender

“We spend precious hours fearing the inevitable. It would be wise to use that time adoring our families, cherishing our friends, and living our lives.”

 ~Maya Angelou

Worrying doesn’t accomplish anything. We all know that. But does that stop us from worrying? No, not usually.

I sat down last night to write about what I’d learned about worrying (and the futility of it) while I was in LA. Wow, look how far I've come. Look what I've learned, I thought. And, boy, that's when I found I had unleashed a monster.

"Nature abhors a vacuum."

~Mark Miller

While my worries regarding Ben are over and done (and none of them came true, by the way) I suddenly had space in my life for a new worry to move in. And the Universe did not disappoint. This worry makes my heart clench and my stomach lurch. I spent all of last night tossing and turning and dreaming sad dreams about it. I woke up with intense upper back pain and felt sick. I was in the hot tub soaking it all away two times before 2 pm. I meditated on it over and over and, finally, I had to surrender it, surrender myself.

I give up. I’m coming out with my hands up. I’m here right now. There’s nothing I can do about this worry. It’s not something I can change. I can imagine all sorts of horrible endings to the story, but there’s just nothing I can do right now that will impact what it is. So I have to let my worries go. 

“If you have fear of some pain or suffering, you should examine whether there is anything you can do about it. If you can, there is no need to worry about it; 

if you cannot do anything, then there is also no need to worry.”
~Dalai Lama XIV

I know they’re there but they aren’t on the forefront of my vision. They’ve gone into a sort of uncomfortable slumber state.

About three weeks before Ben’s surgery I texted our family therapist to see when he’d be in town so we could make an appointment for Ben. Steve moved to Boulder, CO with his family a few years ago but has continued to come out here for long weekends of office hours about every three weeks or so. We’ve been seeing Steve since Harry was eight, that's 12 years now, and he’s been there for us through some very hard times: our move to Sonoma county, Mark’s father’s sudden death, Ben’s brain surgeries, and on. Steve is an amazing therapist who thinks outside the box, encouraged Harry to try meditation, has extended sessions, and works with us however it feels right at the moment, individually, or in family clusters. He’s even come up to our house for a family session, taken Harry target shooting, and taught Harry how to ride his bike 12 years ago. Steve is unique and caring. He’s quite beloved by each of us.

Even though Steve told Mark he’d be in town before we left for LA, he never got back to me about when he’d be there. I still hadn’t heard from him even by the day of Ben’s surgery. I texted him again, saying Ben was about to roll in. I texted him again when Ben came out.

And then I forgot about it, ensconced as I was in the here and now, Ben’s pain levels, my own breathing, recovery.

At some point I called him, thinking, Maybe he’s not getting my texts for some reason. Maybe I should see if his phone is working. When I didn’t hear back I sent him an email. Maybe it is the phone.

When we were out of the woods, surgically speaking, I started to think about how odd it was that I hadn’t heard from him. Mark had told me Steve said he’d be in town and also that he and his family were finally moving back to the Bay Area. That’s all Mark knew, so the rest of my scenario is conjecture: they’d be coming back in time for their daughter to start school some time in August or early September.

Maybe he’s just super busy. Maybe the move got crazy. Maybe he lost his phone in a packing box and still hasn’t found it.

My mind, when I gave it the space, started to whirl about what would be the reason Steve would not call or text or email. At the same time one part of my mind would chastise the other part: How can you think such thoughts? You're making this into a big drama!

Honestly, it’s not that I needed to talk to him. Ben was doing great, I was doing great. All of it went well. It’s just that Steve has been there for us and with us for so many of these huge hurdles and he’s cared so much for each of us. It is hard to fathom how he could just miss it. Just not check in. Not remember. Not see it on his calendar. I saw him write it on his calendar.

There’s another piece of the story that fits in here and that’s that Steve’s had his own medical issues to deal with over the past two years. It was mysterious for quite a while and finally was diagnosed as ALS. He’d suddenly lost muscle tone and use in one arm and shoulder. He went through a million tests and treatments, all the while still flying out to the Bay Area to see his patients every few weeks. And then, just as suddenly as it had started, it stopped and he started to regain some muscle strength. The ALS diagnosis was rescinded. Who knew what it was, but whatever it was it seemed to be in remission.

While all this was going on we were so worried. Our sorrow for Steve, for his family, for us. He was young (Mark’s age) and healthy otherwise. How could this happen? And then, of course, we were so happy to hear of the reversal. What a relief!

But, I still haven’t heard from Steve and it’s now been over two months since the last time he texted me back.

My worrying mind was gearing up in the past week as we returned home, Ben’s situation smoothed out and I had room to think other thoughts. I’ve tried to contact him in the only ways I can, but all of those lead to him…and there isn’t any sign that he’s there. I’m now so anxious about What Might Have Happened. I’ve even googled his name a million times. Nothing. I can’t think of another way to get information about him and so my worrying mind is going pretty crazy with stories. Here are some of them:

1. He died from complications with his ailment.
2. He was in a terrible accident.
3. Someone else died…
4. He is wrapped up in the move.
5. He’s on a vacation and forgot to call us.

“Do not anticipate trouble, or worry about what may never happen. Keep in the sunlight.”
~Benjamin Franklin

Ok, yeah. I’m a catastrophizer. I go directly to the Worst Possible Scenario. I think I mentioned that in a previous post or two. But wouldn’t you? Wouldn’t you wonder why this person hasn’t contacted you at this time in your life? And the problem is that if it’s any of the catastrophic options it’s TERRIBLE. And if it’s that he just has been so busy that he forgot to contact us, well, (I'm embarrassed to admit) I think that’s sort of terrible too, I mean, seeing as what we were going through. But granted, it’s not nearly as terrible. Not nearly. I’ll take that option (but I might want an apology).

I’ve been in knots worrying about the possibilities. And last night I started to dream about him and I was a wreck by morning. Steve has been a part of our lives, has helped us heal and find greater clarity for so long. I’m not sure what to do.

And I can’t say anything to the boys. I can’t tell them what I’m worrying about because I don’t have any answers and I don’t want them to worry like I am…worrying with no foreseeable end in sight.

 

“Worry never robs tomorrow of its sorrow, it only saps today of its joy.” 

~Leo Buscaglia

Finally, today I had a long talk with myself. I thought about what I had planned to write here on my blog just last night. Worrying is so pointless. All night I tossed and turned. You know how much worse a worry is at night. And all day I felt engulfed by sadness, the what if’s and oh please no’s. And then I had to tell myself (several times, because at first I couldn’t really hear it): You are here today. If the answer is A, then you will deal with it when you find out. If the answer is B, then you’ll deal with it when you find out. If the answer is C…and on and on. The story is that I can’t worry about why we haven’t heard from him. I can’t worry because there’s just nothing I can do about it. Eventually, I imagine he will contact me or someone will contact me. But until then, how can I just make up a story? What good is that?

When I was finally able to listen, when I was finally able to surrender to the reality that I am just here in this moment, I felt my tension ease. Surrender. Acceptance. It made a difference for the rest of my evening. I even laughed and had some fun.

I said it before, about Ben’s surgery, it’s not like I won’t worry about any problem that arises when (and if) it does in fact arise! I’ll have to worry then. I’ll have to DEAL with it then. And until then, all I’m doing is sapping my life of its power and its peace.

What a waste. And hopefully, a lesson learned.

Gratitude list

I learned long ago that there is a huge silver lining to our challenging situation. Here is my gratitude list for this trip:

Modern Medicine: We originally came to Shriners (Philadelphia) for their progressive surgical techniques for scoliosis patients. We had two goals: keep Ben's spine flexible and let it grow. We were fortunate to be selected for their care, their expertise and their mission. Dr. Betz (who innovated these techniques) and Dr. Cahill who was Ben’s first surgeon in Philly started us out on a great road. We accomplished the second of our goals largely due to Dr. Cahill’s belief in and skill with these techniques. When we met Dr. Cho in Los Angeles last November we were immediately impressed with him and felt confident that moving Ben to his care would be a positive choice. His skill, confidence, and vibrant demeanor (ok, he’s got a great smile, a great sense of humor, is an excellent communicator, and a snappy dresser) convinced us to move to the LA hospital. Being closer to home both for the pre/post-op visits and for the surgeries has made a huge difference for us. So glad to be in the care of such excellent doctors!

The Kindness of Strangers: While I was planning for this trip I was trying to find a good place to stay while Ben was in the hospital. Near the hospital but in a safe neighborhood. Affordable. Comfortable. Homey, if possible. I kept coming up short. The hospital is in a not so great neighborhood and I couldn’t find a solution that felt like a good fit and was something we could afford. That was when my friends Barbara and Madeleine told me to talk to Paula, someone I know peripherally from my days in LA teaching music at Sholem, a secular Jewish community Sunday school, and who is a friend of theirs in Sebastopol. “Ask Paula,” they both said. “She still knows lots of people in LA.” So I did. Paula put out an email one Sunday to the Sholem community and by Monday I had a response from Susan and Marc Sazer inviting me to stay in their guest room in the Larchmont neighborhood of LA. We spoke and I accepted and…a friendship was born. I am BEYOND grateful for their openheartedness in taking me in. What I got from staying with them was not only a convenient and comfortable place to stay within 10 minutes easy drive to the hospital, but, a loving, warm, and beautiful home to return to every night with friends who wanted to know how I was doing and how Ben was doing. Their dog, Goldie, was my happy companion during the three days they were gone (setting their daughter up at Sonoma State for her freshman year, happy coincidence!), greeting me the way Corgis do, so delighted to usher me through the house to my little guest cottage in the back. Goldie made me smile and kept me company. Susan gave me hugs and a welcome ear to hear of the day’s ups and downs, and Marc uncorked some great wine and grilled up some tasty lamb chops on my last night with them. I deeply believe that what you put out into the universe comes back to you…and I told Susan that they are another link in our chain. (And who could argue with the lovely coincidence of another Susan and Mark/c?)

The Kindness (and tolerance) of Relatives: My gratitude list would not be complete without a full blown kiss and hug and thank you to my aunt and uncle, Adele and Sheldon Miller. They took us in (even a couple days earlier than expected) for over a week and tried to take care of our every need (though we sometimes said, “No, Me Do It!” like toddlers). They wanted nothing more than for us to be happy and healing in their quiet and luxurious home. We got nightly runs for frozen yogurt or pizza, daily runs to Sprouts or Costco. The most comfortable beds were ours for the asking. Wide screen tv. Wifi. We spread out in every bathroom and extra bedroom. And finally, yesterday we got to jump (or wade cautiously) into their sparkling blue swimming pool (Dr. Cho gave Ben the go-ahead for that Tuesday). We enjoyed their stories, love, hugs, and tasty dinners. Thank you thank you thank you, Sheldon and Adele.

Harry Miller: While we were in LA Harry held down the fort. This is not the first time he’s stayed home while we were in LA, but it was the longest time and he was alone for most of it. Not only did he take care of himself and the whole house and all of our critters, but he did it while starting a job at the Sixth Street Playhouse making props for Spamalot, getting hired to be assistant stage manager for that show, and starting a new semester of classes at Santa Rosa Junior College. We’re so grateful to you, Harry, for doing all that for our family, and so proud of you, too.

Toby Miller: Toby was away at camp until moments before Ben and I went to LA for his surgery. We saw Toby for a couple hours in between picking him up from the Camp Tawonga bus and dropping Ben and me at Oakland Airport. After that Toby, otherwise known as Mr. Flexible and Good Natured, went on a whirlwind tour of friends and family staying with: the Boss-Talmans in San Francisco, Cousin Joel in San Francisco, the Nixons in Cloverdale, the Grovers in Oakland, and finally Nana in Oakland. I heard from him every other day or so. He missed me (us) but he did just fine and from all reports he was a good guest and fun to be around. I’m so proud of him. It’s a wonderful life skill to be able to go with the flow and be polite and accommodating and accepting of other people when you’re under some amount of stress (worrying about your brother and missing your family) for an extended period. Proud of you, Tobe.

Friends: Many, many thanks to those folks mentioned above who went out of their way to care for Toby, get him to his next caretaker, feed, clothe and entertain him, and in many ways ease my mind so completely that I had no worries about my baby. That was such a gift. Thank you all so so much.

More loving friends: To the many friends who drove way out of their way to come take care of me, of Mark and me, and Ben with goodies, companionship, and distraction during our two plus weeks here in LA: THANK YOU. You made this period almost feel like a vacation, and I so appreciate that.

Today we head back into LA to visit my lil’ sis, Jenn, and then off to the airport to return home. Looking forward to seeing my honey back at our lovely little rinky-dink Santa Rosa Airport, and all my boys back at Three Boys Farm (and yes, that includes our two cats, two mini-donkeys, and our horse). So glad to be returning with a hale, healthy and TALL middle boy. It’s been quite the time.

Ingredients for healing

Yesterday Ben and I drove into LA for his two-week post op visit with Dr. Cho. Twelve days since his spine was fused with two long titanium rods and 20 3” long titanium screws (and a few hooks thrown in for good measure). Yes, just 12 days since he became the owner of a 16" scar down his back.

 

And yet this boy was able to get in and out of the front seat of the car with ease. This boy traveled pain-free to and from the hospital, walked without assistance of any kind. Yes, this boy was doing so well, he even got on my case when I was overprotective (hey, I’m entitled).

 

Dr. Cho came into our examining room with an ear to ear grin. He had been on a vacation for the last part of our hospital stay so he’d had only reports (from his interns) to go on since he left. But what he’d heard was that Ben was a rock star: strong, healing fast, moving with confidence, low pain. AMAZING. Dr. Cho told us that Ben had bounced back faster, stronger and better than any fusion patient he’d ever seen. He’d blown away said interns. His pride and delight in Ben showed on his face.

He wanted to know our secret. What I told him was physical therapy. Ben’s been going to physical therapy for the past few years and it made a noticeable difference in his recovery from his surgeries right from the start. My belief is that, for kids who have repeat surgeries and limitations to be fully physical in their lives, physical therapy gives them a way to have a strong core, muscle flexibility and strength, and a positive self-concept. I am strong. I can do this. When you’re a kid going in and out of surgeries, like Ben was, well, then those kinds of messages can do wonders for the brain and the body.

Dr. Cho was impressed. “I think I may have to start prescribing that for my patients,” he said. “I think there’s a research paper in there.”

What I didn’t mention to Dr. Cho were some other ingredients in Ben’s success which have occurred to me only now.  

There's meditation. He's been meditating for the past couple years and I know he was meditating in the hospital, post op, blowing the physical therapist away when he told her that.

And there's his sense of humor. Ben told me he was cracking jokes with the doctors as they wheeled him into the OR, indeed continued to crack them up with stories as they were starting to put him under. That is some kind of grace under pressure, right?

But the biggest things have got to be the huge love and support from family and friends. I’ve told you of our hand-holding. I’ve told you about Ben and Mark and their amazing connection. But, I truly can’t emphasize enough how every microsecond of attention that we’ve been there for our boy has made a difference for him. Every spontaneous hug, every hand-holding moment, every incredible conversation I've had with him during these quiet days of rest and recuperation have been healing blessings for Ben (and for me, as well). Lack of stress = opportunity to heal. We were truly changed by this unfettered space and time for him and with him.

An example of the screws in Ben's spine.

Last night, after the hospital visit, we were talking about some folks we know who have no contact with their parents. Ben reached out for my hand (he still is wanting my hand to hold) and our eyes met. "Can you imagine that?" I said. "Only talking to each other once a year or never?" Ben, eyes very wide, very very wide, looked straight at me and shook his head slowly. "I don’t ever want to have a time like that with you, Mama," he said.

We have been so lucky to have been surrounded by love and compassion, so that we could give Ben exactly what he needed: Us. While we’ve been here in LA we have experienced the grace of loving kindness from strangers and family members and friends from many years gone by. The loving embrace and care of these people has made all the difference for us, made it so we could have the space (emotionally, physically, financially) to be right there for Ben as long as he needs us, made it so we can not worry about anything but healing and moving forward.

More to come with a gratitude list tomorrow morning, before we head for home.

Inspiration

Taller.

 

“Inspiration is wonderful when it happens, but the writer must develop an approach for the rest of the time... The wait is simply too long.” 

–Leonard Bernstein

Ben is a healing superstar. He is so incredibly strong. Good spirited, sweet. I can’t get over how well he looks, how smoothly he moves, how charming he is in this hardest of hard situations. We had a whole crowd of cousins come over for a visit last night (several teens in that crowd) and he sat with them for hours eating pizza, laughing, joking around. I checked in with him a few times, knowing that he would not like to concede to exhaustion or pain, but might, in fact, be suffering. I ushered them into the house after a few hours (the longest he’d sat in a chair, indeed the longest he’d been upright since the surgery) and suggested he lie down on the comfy bed in my aunt and uncle’s bedroom, while the other kids lounge and chat with him there. Even when they left at 10pm he didn’t look worn out. Happy visits are good medicine. But he did sleep for 13 hours straight afterwards. That’s good for healing, too.

Sarah, Marissa, Ben and Corinne yak it up. Too much fun!

And for me, seeing their moms, my beloved Julie and Jody, was wonderful.

I’ve been wondering what I will write about now that Ben is done with his stream of surgeries. He suggested to me, when he overheard me saying this exact thing to my friend Barbara on the phone today, that he could contract a new disease. I think not.

What is the Muse? What is the urge to write? All those artists whose angst gripped them until they spilled their paints on canvas or wrote the lyrics to their heart-wrenching tunes…what is it about art and pain that flows together so well?

I can say that I just am someone who processes my troubles in words. Whether it’s on my blog or in a poem or in one of my messy art journals, words are spilling from me when I am full of worry or sadness or shame. I’ve definitely noticed, and you may have as well, that this blog is a little quiet in the in between times. When Ben is out of the hospital, or healing at home, in the past few years I haven’t spent much time writing here. Part of that is definitely due to time. When he is in the hospital or recovering I am closer to him, to home, to my computer. It’s also due to my need for emotional release.

A huge part of my experience on the blog is sharing my story with you, Dear Reader. Over the years, the feedback I’ve gotten in comments and private emails and likes or notes on Facebook have really warmed my soul. I love that I can touch your heart with my words. I don’t intend to move people to tears, but I know I do. And part of that is just Ben’s story in the raw. What could be more soul-wrenching than that kid’s story? But I also know it’s how I tell it.

That brings me to something I’ve been thinking about for a long while: publishing this story in a book. Over the years, many folks have suggested that I do that, but I haven’t felt that the story had a conclusion and without a conclusion I didn’t feel like I had a whole tale to tell. Now, with this last step taken I can see we are emerging from the tunnel and now feels like a natural time to wrap it up. I’m not sure if I’ll be looking for an agent and publishing the traditional way or choosing to self-publish. That’s a whole world I have only considered (with some trepidation, I’ll admit) from afar. It’s completely intimidating, honestly, to think about.

I plan to keep writing here but I’m really not sure what I’ll be writing about. This and that seems too fluffy, homeschooling feels like yesterday’s news, crafting and other pastimes are done and overdone all over the blogosphere. I need to figure out what moves the words out of me…and I suppose I will need to “develop an approach for the rest of the time.”

Exhaustion

We packed up all of our things and left the hospital yesterday afternoon. I had anticipated hugs with nurses and waving a parade wave down the hall as we departed, this seemed like such a momentous occasion beforehand. But, in the moment it was lacking in fanfare. Ben’s nurse Naomi (who had tended to him back in November last year when he was there for emergency surgery) was nowhere to be seen, the halls were fairly empty and quiet.

We pushed Ben part of the way in a wheelchair stacked with extra pillows but when we got to the elevator he stood up and started pacing, perhaps to alleviate some nerve pain he’s been feeling in his left thigh, perhaps to alleviate some nerves. Four elderly gentlemen in white Shriners uniforms were seated in chairs under the windows between the elevator and the registration desk. (They are the drivers, Shriners members who donate their time to pick up and drop off Shriners patients at their homes in and around LA and beyond. The dad I mentioned in my previous post said they’d come all the way to Las Vegas to pick them up and bring them to the hospital for their son’s appointments and surgeries.) I wanted to take a picture of Ben with them, but he refused. Not in a picture-taking mood, of course. But I really was wanting to document this crossing of the threshold. Last Moments in the hospital for Last Surgery.

Getting Ben into the car was a complex procedure since he has strict rules to not bend, twist or lift for the next six weeks. Try getting into a car without bending your head and neck down or swiveling your torso around. It’s quite challenging. First we opened the doors and he assessed the situation. Then he sat down, a bit of his tush on the edge of the seat, and shortly found that his head could not go straight back into the car. At all. I had visions (panicked) of sending him back up to his room to wait while Mark drove the car back to the rental agency to trade it in for an SUV with a taller doorframe.

Ultimately, he decided to try for the backseat and, lo and behold, was able to manage that. We settled him in, packed the last things into the trunk, buckled up and off we went. I made Mark drive, he’s more careful and slow in general about driving than I, but also because I had an enormous anxiety that I would get us into some kind of accident and Ben would never forgive me.

The trip to my aunt and uncle’s place in Calabasas was easy and smooth. Ben extricated himself bravely from the backseat and headed for a bed where he could relax.

I think it was just about then the exhaustion set in.

I had not had a good night’s sleep the night before. Or the night before that. Or before that. Not that it wasn’t comfortable where I was staying (more on that in an upcoming post). But, let’s face it, restful sleep is not something that comes to me easily in the best of times, let alone when we are heading into a surgery or going through one.

But this exhaustion was bigger. It felt like a monster. I felt like I needed to sleep for a year to recover. And every time I looked over at Mark he was yawning. I was not alone in this.

Ben was comfortably unfolded on my aunt and uncle’s Tempurpedic adjustable bed, tapping away on his phone, then playing Xbox. I retired to my room, kicked off my shoes, and lay down to rest.

My heart started pumping, hard, fast.

I remembered to breathe. I noted my poor, anxious heart. I closed my eyes.

I tried to surrender to my exhaustion. I tried to, but it was nearly impossible. I had big gratitude for where we were, on the other side of the surgery, at a peaceful and loving haven. I breathed in the beautiful quiet, the house plants, the light, the colors and the comfortable bed I was laying upon. No go.

I took a stroll and found another spot to rest, on a chaise longue next to the pool. I leaned back on soft white towels laid out as if it was a posh hotel, and felt the warmth of the Southern California summer day envelope me. I closed my eyes again, trying to just rest and relax into the moment. I listened to the birds. I breathed some more. Despite all this, it was not easy.

There have been years of build up to this exhaustion. From the first brain surgery over seven years ago, to today, I have been holding myself together to manage to survive. I have been holding my breath, crossing my fingers and toes, praying, meditating, planning, and researching. I don’t look like a wreck from the outside, and in some ways I don’t feel like it on the inside. But in this moment, when I measure the full volume of my exhaustion, then I know the toll it’s taken on me.

We had a lovely dinner with my aunt, uncle and cousin, who came by to see Ben. And we went to bed on the early side, for us. Within a couple hours my phone was beeping, and in the dark I read a text from Ben, informing me that he had something bothering him, a pain in his eye.

I went into his room, and he was writhing and moaning. His eye was in excruciating pain and, when I looked at it with a flashlight, I saw it was very red and maybe there was some bump on the inside of his upper eyelid. I gave him eye drops and considered that in the morning we would somehow have to take him to an eye doctor or convince our family doctor back home to prescribe something over the phone. The thought of folding him back into the car was enough to set my heart to racing again.

I gave him his pain meds, more eye drops, and a cold compress on his eyes. He and I decided I should sleep with him (I gave Mark a break and let him have a much deserved night of nearly uninterrupted sleep) and so I moved my pillows in and got in next to him. I held his hand and he fell asleep quickly. I relaxed a bit and then forced myself to surrender, again, to the moment. The moment of deep night, darkness, and no answer to hold on to. I breathed in and out with intention. I relaxed my muscles and thought to myself: You cannot solve this now and so you must sleep.

Today he awoke with back pain but no eye pain. Today we will rest and then rest some more.

Perspective

Ben taking a walk around the 2nd floor with his physical therapist.

Today when I arrived at the hospital I could tell Ben was feeling better, much better. His face was light, his eyes bright. A smile curved at the corners of his mouth.

I knew immediately he had good news.

Ben’s putting the hospital staff out of business. He is a poster child for recovery. He’s being discharged tomorrow (and honestly, if we wanted to leave today, they’d okay that too). The physical therapist, nutritionist, recreation specialist, and intern have come by and said, “Well, you’re looking good, man, you’re good to go.” I think they’ve even sort of shaken their heads in disbelief.

Truth be told, I think Ben is an unusual patient at Shriners. Believe it or not, his situation isn’t as dire as some.

We’ve had more than our fair share of time at hospitals. Ben has been a patient at Alta Bates in Berkeley, Children’s in Oakland, Shriners in Philadelphia, and now Shriners in Los Angeles. There’s something different about hospitals that cater to children only. There’s something more heart-wrenching about the children and families you see in those hospitals.

When we were at Children’s Oakland for Ben’s brain surgery ordeal we were newbies at this hospital business. I’m the type of person who likes to connect, who needs to connect. But a hospital, especially a children’s hospital is not a place to connect, especially not with the other parents. For one thing, everyone is entirely consumed with anxiety and worry about their own child. Many parents are on edge. Most just don’t have one extra molecule of space for your story or your child’s story.

And then there’s the issue of whose child has the worse situation. Here’s the deal: If I ask you why you’re here, and you say, “My child has a brain tumor,” then you win. I mean, you lose and you win. You have the worse condition to contend with. But if you say, “My child broke his ankle,” then I win. And guess what, I really don’t want to win. Do you know what I mean? It’s a terrible, terrible place to be in, so it’s just easier to not engage with the other parents, if at all possible.

When we were at Children’s Oakland we were there for so long we had to connect with someone. So, we connected with the nurses and physical therapists and chaplains. I would ask them questions about their lives or tell them something about us that wasn’t visible on the surface or in Ben’s medical chart. We’d try to find safe ways to make connections and get support and solace, that’s what our friends and relatives were for. We barely looked the other parents in the eyes.

Last time Mark was here at Shriners Los Angeles, he encountered a dad who hadn’t learned that yet. He wasn’t a newbie at hospital etiquette, but for some reason he hadn’t gotten the memo. He and his son were sharing a hospital room with Mark and Ben, and Mark had to hear their whole story, despite his desire to do anything but. There wasn’t an easy way to get out of it. He was stuck there. They all were. And guess what, the other dad won...his child had the worse condition, and still he didn't get it. DON'T SHARE. (No boundaries, right?) And when he returned home, Mark shared with me how uncomfortable he felt when that dad, just seeking companionship and connection, reached out and in way too far.

The fact is that children’s hospitals are brutally painful places. Despite the cheerful décor, the play rooms and video game consoles, you cannot escape the unfairness of life in a children’s hospital. Here at Shriners, where patients are given FREE* medical care with some of the most innovative techniques to be found anywhere, there are children from every ethnic group, many third world countries, and speaking many different languages. And, they have many different afflictions, most of which make Ben’s situation look like a walk in the park.

It’s a strange thing. In our world—and by that I mean our relatively affluent homeschooling, organic, politically liberal, well-educated world—Ben has possibly the most serious condition of any of his friends. He’s had more surgeries than any group of people I know. I think almost everyone in our life views his situation as one of the scariest and hardest situations that they know of.

But, one hour in Shriners Hosptial and your view of hardship changes.

When we arrived at Shriners Philly for Ben’s first spinal surgery it was about a month after the earthquake had happened in Haiti in early 2010. Teams of Shriners doctors (and doctors from many other hospitals, for that matter) were flying down to Haiti to care for the devastated populous. Shriners had actually been flying children and their families up to the hospital in Philadelphia, an orthopedic specialty hospital, to give them their care. We were confronted with children in wheelchairs, all with recent amputations, wheeling around the atrium, the play areas, the hospital rooms.

They were beautiful, these children. They were happy. I’m not kidding, they were always laughing and happy. I couldn’t believe it. That part was really different. But seeing them and their bandaged stumps, that was truly one of the hardest things I’ve ever experienced.

Shriners LA is not much different. It’s not post-earthquake, at least not of epic proportions. But each child there, each family, is experiencing their own personal trauma. Last Wednesday, when Ben and I arrived in reception for his pre-op appointment, he was the only child not requiring a wheelchair or walker or arm braces. He was the only one.

It put his upcoming fusion of 12 vertebrae into some kind of raw perspective.

I used to have to take anti-anxiety drugs to manage this reality. But I’ve found on this trip that other people’s situations are not getting in. My defenses are stronger. I have my empathy turned down really low.

The other thing, frankly, is that I know that here is where these folks are getting some of their needs met. The doctors are so skilled and these children are getting the best medical care. It’s a place full of blessings, really.

We’ve spent the past five days ensconced in Ben’s quiet private room. There are hardly any long term patients here (he was literally one of only three over the weekend…it’s a bit odd, really). The buffer between us and the rest of the world is nice and thick. I like that. It helps with healing.

As for now, Ben and Mark are enjoying an old favorite activity from our first lengthy hospital stay, watching reruns of Family Guy. (I just told the nurse that it offended me 7 years ago and it offends me now!) But, it makes them both laugh, and that’s just fine with me. Seems entirely appropriate to be doing this on, ostensibly, hopefully, our last night in the hospital.

And by the way, I told Ben after the intern checked him out and told him we were free to go whenever, I looked Ben in the eye and said, "You're too good at this, mister. Time to get good at something else."

---------------------------
*Shriners Hospitals (And yes, I am spelling it correctly. There is no apostrophe.) have a very interesting history. If you are moved to make a charitable donation, I urge you to do so. This institution has taken a big hit in the current economy. Half of this hospital is closed down and that is a damn shame. We need more institutions like Shriners to innovate in medicine and care for underprivileged children.

Rollercoaster

rollercoaster: resembling the progress of a ride on a roller coaster in sudden extreme changeableness.

Day 3 post-op brought us these high and low lights:

• No fever to return of fever and back again
• A walk around the entire second floor of the hospital with a walker to too much pain to walk and back again
• No pain to fear of having pushed too hard and back again
• Appetite to no appetite and back again
• Joking to moaning and back again
• Bright eyed to depressed and back again

This is life in the hospital. Thankfully the day ended on an up note. Mark texted me to let me know that Ben made a comeback, walking successfully around the whole second floor again and half of it without the walker.

Today I saw in Ben a focus on success. I observed almost a warrior’s determination in the line of his mouth as he strains to get himself from lying down to sitting to standing, and back again. I cannot imagine the amount of resolve it’s taking him to believe in himself, believe in his muscles to do this work, that hardware to hold together. I can only see it in the intense effort of his body. The look, straight ahead, unwavering, of his eyes. He is so strong, and by that I am referring to his will, not necessarily his muscle.

But I also saw his tender little boy side, when after attempting to get his digestive tract moving again (three days under morphine are not helpful…add to that the physical situation of a spine that won’t bend, and a newly healing incision 6” above your bum…the psychological impact of all that is not to be downplayed) he felt that he’d strained his lower back and returned to his bed in terrible pain and even worse self-esteem. He blamed himself for hurting himself. And if he could have, he would have curled up into a ball. But, that is not a pose he is ever going to be able to take again.

He raised his hand to me to hold (earlier in the day he hadn’t needed me nearby at all), he whimpered when I said I’d be leaving soon to go home. He held onto my hand with both of his. He lay with his eyes closed, pain across his brow.

I told him to believe in himself and how hard he is trying. I told him that this is the rollercoaster of recovery…up and down and up and down and eventually, up again. The more you push through the sooner you’ll get off the ride.

I told him that accepting that it’s going to be like this will ease his struggle some. But the truth is, we just have to hang on till the car comes to a complete stop. I'm looking forward to getting off this ride.

And as I thought about this rollercoaster we're on, this song from my early teen years 

popped into my head! Cracks me up...and a little levity (and music) is a very 

good thing! "Love Rollercoaster" from the Ohio Players.