Superpowers

Toby with one of his little buddies at Pastures.

Weeks before Toby's Bar Mitzvah, I began to ponder what I would say to him during the "parents' speech" moment in the service. You see, after the prayers and blessings and passing of the Torah through the generations, after the sermon and the Torah reading and the blessing from the rabbi, there comes a moment when everyone pulls out a hankie and the parents of the Bar or Bat Mitzvah march up to the podium to speak about their beloved child. I have rarely heard a parent not say something eloquent. I am almost always moved by their tender reminiscences, their insights into their child, and their quavering voices. It's a momentous occasion and calls for an exceptional speech. I wanted to do Toby proud.

Mark and I are good editors for each other. We've always weighed in on each others' writing. We also have a tendency to say the same thing when we are working, separately, on a speech for a particular occasion. It happened when we both wrote eulogies for Mark's father's funeral. It's happened other times as well. So, when I asked him, "Have you thought about what you're going to say on Toby's Bar Mitzvah?" I shouldn't have been surprised when he suggested we write a speech together.

"We're just going to end up saying the same thing anyways. Let's just start off together," he said. And that seemed like an excellent idea.

Writing it was fun. We quickly got into a groove. I wrote a big chunk. He went in, edited and wrote some more. I went back in, edited and added more. He edited. We polished together. We practiced. We honed. We're a good team.

We kept it a secret. We knew all of our kids would be surprised by the theme. What we didn't expect was the response we would get from Toby, his brothers, our niece, and many, many friends and relatives. Toby said, "Wow." From Harry, "Why didn't you give that speech to me for my Bar Mitzvah?!" My niece, apparently, turned to her father and said, "Top that." (Her Bat Mitzvah is in April!) Over all, the reaction was: What a wonderful way to honor Toby.

That was our intent. It's a very satisfying thing to be able to say out loud, in front of hundreds, what you know about your child. It's also very satisfying to tell it to your child, in such a moment...standing on the threshold of young adulthood...time stops and you grab his attention.

This is what we said:

SUPERPOWERS

Susie:

     Toby, we are both so proud of you and what you have accomplished today. This year, preparing for this day has been an incredible journey. You worked incredibly hard, you never complained, you felt the weight of your responsibilities. You came at it with your typical sunny attitude. And you’ve shown us what perseverance, hard work, and practice, practice, perfect practice can accomplish. You’ve given us insights into the Torah and leadership. And you’ve led us in a beautiful Shabbat service. All major accomplishments. We’re so proud.

Mark:

     As much as this might be a moment, when you stand before us and we have your attention, to teach you something important that we know, to share with you some little life secrets that parents are the keepers of, before we send you on your way into adulthood, Toby, we have to say that what we want to tell you right now is that you have everything you need to know right there inside you. You were born knowing what to do to lead a full and rich and joyful life.

Susie:

     We were thinking we could talk right now about your leadership qualities, since that was your focus for your sermon. But, really, you already did a great job with that. However, being the third of three brothers, we think it’s really important for you to know how you stand out in the crowd. What makes you special, what makes you YOU. And, indeed, what qualities you have that will carry with you into your adult life. We believe you have some other strengths that we ALL can learn from.

Mark:

     But, we’ve decided to think of them as superpowers, because we both know how important superpowers are to you, and to your brothers, and to your friends. And really, we want to talk about your superpowers because we think you should know what they are.

 

Susie:

      1. The superpower of Golden-heartedness: Toby, I have always called you “my golden-hearted boy.” This, I think, is your greatest power. With it, you live in the world with almost-nonstop positivity. The words from the Torah that you put on your tallit, “Gimilut chasadim,” acts of loving kindness, is how you choose to live your life. You are cheerful and optimistic on the darkest days, the hardest moments. I can recall so many times your smile lit the room and made things easier for us and those around you. That is a gift, a superpower, to be certain. With your golden heart you see the best in people, you believe in them, you befriend them, and you enjoy them. You are tender with small children and loving with your elders. Toby, with your golden-hearted superpower you bring boundless amounts of good into the world. As far as we know, there’s no limit for this power. So, go out into the world and spread it around. The world really needs you.

Mark:

      2. The superpower of Voice: Several years ago we took you to the doctor to get your hearing checked. Why? Not because you didn’t respond when we talked to you, no, but because you talked so LOUD all the TIME! We thought, maybe you had a hearing deficit. Well, you were checked and the doctor said, “Nope…he’s just the littlest brother trying to be heard above the din!” Well, today we’re here to tell you: It’s another of your SUPERPOWERS. With your voice you speak up for yourself when needed, to share your ideas or when you aren’t being heard…which is too often when you live in a family of talkers and jokers and opinionated speakers. You also speak up for yourself in situations that might not be so easy, like when you feel you are being wronged, or someone you care about is. With this superpower you look out for yourself and your friends, you get your needs met. A really good example of this is that since you were a young boy (a young superboy) you have never been shy to speak up and ask for what you need in any situation, at a restaurant, or a store, at home, or at a friend’s home. You might have been shorter than the counter at the store, but that didn’t stop you from going forward and asking for help. There are people in this world, Toby, who don’t feel they have a voice, or a right to speak up for what they need. You can use your superpower to help them, to heal the world, and to make a difference. This is an amazing superpower of yours.

Susie:

     3. The superpower of Forgiveness: You forgive faster than anyone we know. Maybe it’s being the baby of the family. Maybe it’s just your nature. Or your superpower. But, your capacity for forgiveness means this: you don’t hang on to the bad stuff for long. You move on. You get over it. And in general have a very sunny view of the world. Forgiveness as a superpower puts you in league with Gandhi and Martin Luther King, Jr. It’s what they preached. It’s what they lived by. That’s not to say, the hurts and harms don’t sometimes get you down, but you don’t stay down for long. You have already taught us what these two men did to make a difference on the planet, what will you do with this superpower?

Mark:

     Before we close, we want to point out something else that comes with being a superhero, though we’re not sure if it is a superpower, per se. And this is, Always Wear A Costume! Superheroes know this. They’re all about their costumes. And you have always been all about your costume too. Hats, snuggies, ties, trenchcoats, you have quite an arsenal.  Since preschool, at your beloved Pastures, you have had definite ideas about what you wore, and chose outfits that were always uniquely you. We think it’s a definite sign…of superheroness.  But as you go on in life remember: no capes.

     What we really want to tell you is this: Take your superpowers out into the world with you. Bring your golden heart, your forgiving heart, and your voice wherever you go. Our family is oh so lucky to have you in it, the third beloved brother, the youngest son. The world is oh so lucky to have you in it.  The world is a better place because you are in it.  And we look forward to seeing you share your gifts with the world.

     We love you.  Always have, always will.

Bar Mitzvah

In a few hours my baby will become a man. Well, at least in the eyes of the Jewish community he will and today that's enough for me.

The Ancients were so right when they chose 13 as the threshold year. I saw it seven years ago with Harry. At 13 something really does shift. A seriousness, a bit more of an awareness of the weight of the world comes over them. Today marks that passage, the beginning of a shift out of the innocence of childhood.

(I must admit, I saw this happen with Ben much earlier, whether because of his nature or because of his life experience. He had decided, at 11, not to go through the Bar Mitzvah process and we supported that, feeling he'd already had his own rite of passage. But all that's another story for another day. Today is Toby's story.)

Toby has worked incredibly hard for this day. I remember several months ago when he and I first sat down at the computer to listen to his parsha, his Torah portion, chanted in Hebrew by the computer voice of "Trope Trainer." (And here's a plug for Trope Trainer: amazing way to learn your parsha! Five stars!) I read along with the musical notation and the Hebrew as the computer voice sang, "Vay'hi mi ma hora..." in its robotic twang. Toby's eyes got bigger and bigger. I remember thinking, "Oh gawd. This is huge. This is HUGE." I wondered if we'd started this process too early. "Why didn't we wait, give him more time? Is he ready for this?"

This is a rite of passage and since the beginning of my people's history, or at least early on, it was marked by this event: a boy of 13 standing at the front of his community, reading from the holy scrolls telling his people's story, leading them in the Sabbath prayers before God, learning and then carrying on the tradition of his father, grandfathers, and great-grandfathers, and going forth to be a responsible part of that community, that tribe. (In recent times girls have been given the opportunity to also hold that place, and that's called Bat Mitzvah.)

Today Toby will lead our Shabbat service, give the sermon based on the week's Torah portion (the same section being read by Jews in every synagogue on the planet), and read that portion from the Torah. This last part, is no doubt the hardest, as the Torah must be chanted, in a particular melody, and it is written in Hebrew with no vowels and no punctuation.

Toby has been working on the entire process for years, but specifically with tutoring and daily practice for months. That day we sat and listened to the computer program chanting his part to us, we both woke up. This is BIG. This is going to take hard work. I think we both gulped.

But he did it. He worked so hard, harder than he's ever worked on anything. He never complained, well rarely, anyways. I didn't have to cajole or bribe him. This was his work to do. And he came to it willingly with determination.

A month ago he was ready. He knew all the prayers, had his sermon down, and could chant his Torah portion perfectly.

"You could have your Bar Mitzvah tomorrow!" I told him.

"I'm not emotionally prepared," he said to me.

For days this week he's had trouble sleeping. Was so nervous he couldn't eat. He put my hand on his chest yesterday after he woke up to feel his pounding heart. Last night at Friday night services (in which he was to chant only two prayers) he told me he thought he was going to faint. But once he stepped onto the stage (called the bimah in Hebrew) and started to sing the first words in Hebrew, I could see he had confidence. I could see he was emotionally prepared.

And last night at 10 pm he came upstairs to say goodnight, happy, content, and so very calm. It was wonderful to see him back in himself again. And knowing he would have a good night's sleep, I was able to have one, too.

Today isn't just his big day, I might add. It's also a big day for each of us in our family. For me and Mark it's a love fest. Friends and family are coming from afar to witness this event. It is a rite of passage in an age when that has mostly been lost in our culture. For many of our friends this is their first time attending a Bar Mitzvah and they are excited to be there. Tribal rituals are fascinating, and moving, and so important. I feel so lucky that my tribe still has them.

For the grandmas (and aunts and uncles and cousins), there's, as they say in Yiddish: nachus, or kvelling, or good ole soul-stirring pride and joy. For the big brothers there's a certain awe in their little brother. He's big now. He's catching up.

It's truly an event as big or even bigger than a wedding, in some ways. Not just because there's a religious service and then a big party (actually two parties!), presents, and cake, and singing and dancing. It's big because it's about something that Mark and I created together: our family. When we got married, it was a blissful, amazing day, full of our best friends and family, speeches, hugs, dancing. But when Harry had his Bar Mitzvah over six years ago it was so much bigger. It was the friend pool we had grown as a couple and a family. Our family was bigger. Our community was bigger. Today it's even more so, because we're that much farther along in our lives together.

I almost forgot to mention that one thing making this day significant is that I will be officiating, as the cantorial soloist, or spiritual musical leader, at Toby's service. It's something I've done many times over the past year as our synagogue searched for a new "official" cantor. It's something I've really enjoyed doing. But, since we have a new cantor now, I hadn't planned to lead Toby's Bar Mitzvah. And then a few months ago he told me he wanted me to do it.

I declined. "But Cantor David has such a beautiful voice and he's so nice!"

"You have a beautiful voice, Mom," he told me. Did I mention how sweet this boy is?

"But, it's his job!" I protested.

"Why would you do it for other kids and not for me?" he asked, getting to the heart of the matter.

And a week later I was on the bimah (filling in for Cantor David who couldn't officiate at that Bat Mitzvah because his wife had just had a baby) and I looked at Toby sitting with his class and thought, "Yeah, why would I do this for another child and not for my own son?"

"Okay, I'll do it," I told him later that day. And he beamed.

So, today is our show. My youngest son's and mine. It'll really mostly be us up on the bimah, chanting, singing and marking a rite of passage in view of all our loved ones.

Here's to a blessed day!

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.

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.

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.

My most important hospital job

It was only with the greatest powers of self-control that I did not burst into tears in front of Ben today. You can imagine why I don’t want him to see me cry. I’m supposed to be there to support him, not to make him wonder if there’s something he should be crying about, or to feel responsible in some way that he made me cry.

I looked away. I looked up at the clock. Don’t cry. Don’t cry. Don’t you dare cry. And then I looked back at his beautiful face, a sheen of sweat and oil from three long days in the hospital, fever and exertion as well as strength and grace shining there. And I got myself under control.

He had just gotten from the bed to sitting to standing to walking a few steps and turning around to sitting down in a high-backed wheelchair. That, my friends, is an amazing feat. I had been sitting across the room  tapping away on my thumbs and forefingers. My eyebrows had been plastered up somewhere near my hairline. My lungs were not moving. My mouth might have been hanging open. It was a tense moment for me.

But, he did it, my boy did it (despite, I hate to say, two nurses lacking, um, finesse). And then said he was feeling nauseous. So, at that point I came over to hold the salmon colored plastic basin under his chin. Mark stood behind him holding an ice pack on the top of his head. He was adjusted to an angle that was comfortable. He was looking straight ahead.

We just were there, having a family moment, I guess you could say.

And suddenly I was flashing back on his birth and how he came a little early and had trouble regulating his body temperature so we spent days in my bed, skin to skin. I was right back there in those first days of his precious life, holding his little naked body against my naked chest under piles of warm quilts. And those were some of the most incredible mama moments of my life, my temperature keeping his temperature even.

Right in front of me is this boy-almost man (who, I must say looked a LOT taller when he stood up out of the hospital bed). Right in front of me, my baby-boy-man, and I was standing there doing something, whatever I could do, to ease his suffering, and the tears, I could feel them coming to the surface.

Today has been a hard day, the second day after surgery always is harder than the first. Hard only in that he is feeling more pain and he’s having to do all the hard stuff, like MOVE, when what his body would actually like to do is be still. Hard for me, because I’m the mama.

We all know he has to do the hard stuff, I mean, it’s not like he hasn’t been in a hospital situation before, but that doesn’t make it any easier. However, he knows the routine and he’s got quite a strong spirit. He does not complain. He does not cry. And later, when Dr. Cho came in to check on him, asking, “How are you doing today?” Ben said, “Great!”

Oh! Haha…I wasn’t going to say that!

When I first arrived this morning [with Mark’s fried egg sandwich, our lunch in a cooler bag, my laptop, my knitting (which I have not touched), a novel about photography, a book of Rumi poetry, my sketchbook and pens, etc. etc. etc. (as if I am going to have a lot of free time)] I went straight to Ben’s bedside to do my job: hold his hand. He was resting after a difficult morning in which the above-mentioned nurses manhandled him after first opening an ice bag on his head, drenching him with ice water, and in which his catheter was removed. Ouch.

For a while I just sat with him, his cool hand in mine (one of my most important hospital jobs). I stared at the wall and watched his face as he rested peacefully. At some point he called Mark over to hold the pee bottle for him (one of Mark’s most important hospital jobs), and we all were quiet as we waited…and waited…and waited. (It takes time.)

“I love you guys,” he said into that quiet.

Mark and I looked at each other across his body. I think we were both feeling the love spilling over. It was such a vulnerable and tender expression of gratitude. And unexpected. My heart broke quite open.

In the days before this surgery I kept feeling him push me away and I knew that it was okay, that it had to do with self-protection. If you let Mama and her emotions in too close you might feel them too. In those days he actually really needs Dada and his self-contained, humor-laden, no-nonsense attitude. But when I show up at the hospital every morning, I see his IV-encrusted hand raised above the hospital bed rail, waving little waves at me as he says, “Mama” in a croaky little hospital voice. I spend most of my time there sitting by his bed, my love spreading into him through our hands.

My most important hospital job. Actually, my most important job…period.

On our way to the other side

And so the journey to the other side begins.

It occurred to me the other night as I packed and repacked my suitcase for our trip to Los Angeles. This is our last (God willing) hospital trip. This activity that we’ve had to engage in over and over these past seven years is ending. No more preparing for surgery, not physically or emotionally.

What will that be like?

A couple days ago, I gathered with some of my Jewish women friends and we sang and meditated and they bestowed beautiful blessings of strength and presence and awareness on me. As I climbed into my car Barbara said, “See you on the other side.” That made me pause.

The other side. The other side.

This side I have been on has been fodder for my writer’s heart, no question. Angst and sorrow certainly does seem to call in the Muse. Ask any country music singer. Ask any artist. Ask van Gogh. And in this part of the journey I am sure I’ll have plenty to write about.

But afterwards? I spoke to a friend who I met years ago on a support forum for parents of kids seeking scoliosis treatment at Shriners. Her son went through the same stapling and hybrid rod adjustment surgeries as Ben, at the same time as Ben, but two years ago his spine just was curving too aggressively, so he underwent fusion then, at age 12. She told me that she barely could remember the time before fusion. Things are going well now, and those days of going in and out of surgeries like walking through a revolving door, well, all of that is just a distant memory.

So, of course, that sounds good and it’s so hard to imagine, as well. Like imagining you’ll meet your handsome prince when you’re out on date after date with frogs.

How do we define ourselves now and how will we define ourselves after, on the other side? Who will we be then and there?

Especially for Ben, this time will be transformative in more ways than one and certainly in more ways than just physically. But physically first, he will be a couple inches taller (straightening out a side-to-side curve, a rib rotation will do that to a body) and less self-conscious about his posture (something he shared with me today). In fact, he’ll have the best posture around…whether he likes it or not! Emotionally, it’s a different story. This is the end of so many years of hesitant living. An exhaustion (that is also physical) hangs over all of us, and I don’t even think we realize how heavy it truly is. So as that lifts and we feel lighter and lighter with no surgeries down the pike, well, I can only think it should mean we will feel more and more free. But, especially Ben. And perhaps less and less different from everyone he knows.

I am struck by Ben’s grace throughout this whole ordeal. (And by “whole” I mean, this surgery, this year’s several surgeries, these past four years…his whole story.) Today, the day before surgery, was challenging and yet Ben was fine through it all. I noticed how sweet he was with the nurses at Shriners, even when they kept us waiting and waiting, sent us home and coming back for a messed up appointment time. Even though it all worked out in the end, I found myself telling and retelling the story of our waiting to whomever would listen. At one point, after I rehashed it with the nurse at the clinic desk, Ben said, “Thank you! Bye!” over his shoulder as we headed to the elevator.  “Mom,” he hissed at me, “You shouldn’t be complaining to the nurses. They have so much crap to deal with every day.” Word.

He heard me telling it again, though, to Mark and I heard him mutter, “I put that down hours ago, when will you?”

Later he chastised me for jaywalking. “It’s not as if there aren’t crosswalks all over the place!”

He put my hand back on the steering wheel when I patted his knee, lovingly, as we drove home from our appointment. “Keep both hands on the wheel, please!”

“I didn’t know you had such a penchant for justice,” I said.

I am listening and learning from my boy. He is definitely my teacher.

At some point today, after the appointment with his surgeon in which we went over every detail of the surgery, every gory detail, with a fine toothed comb, I noticed he was a little quiet and asked how he was doing. “You know, I was just thinking about that,” he said. “When Dr. Cho talked about the [urinary] catheter I noticed my arms started shaking. Now I’m not sure if I’ve just been in a state of denial or acceptance.”

“Maybe it’s both,” I suggested.

“How can it be both? They’re the antithesis of each other!”

Maybe not. I see them as easily coexisting for him. One part denial, one part acceptance. It’s like just enough of each to maintain equilibrium. Until the doctor starts talking about catheters. And then it gets all too real.

And life is like that. Equal parts light and dark.

Tonight on the precipice of the Other Side, I am feeling how I've been, who I've been on this side for these many long years of surgeries. Being Ben's mom has definitely defined me in some ways, and being his mom is a huge honor. And a learning experience. When I consider it this way then it feels that I will just continue on the same...honoring my son, being awed by him, loving that I am his mom.

I'm ready to say goodbye to this chapter. It's definitely time.

And, it’s also time for bed. Ben has unplugged his Xbox, is getting ready to call it a day. Tomorrow we rise bright and early and head to the hospital by 7 am. I will attempt to write and post while he's in surgery, or at least when I get back to my digs. I have more to tell you. But it’ll have to wait.

Think good thoughts.