Friday, November 18, 2011


I feel that I've been so selfish, keeping this information from you, but I want you to know that Ben has turned a corner.

Something shifted with this last surgery. Something shifted in such a big way that it feels like we're suddenly in a much sharper, more spectacular focus.

Ben is happy.

Sounds deceptively simple, doesn't it? Happy. Content. Cheerful. Laughing, telling jokes, smiling, willing, open. Seems pretty run of the mill, as far as states of being go. But for this boy, this boy on the verge of his 14th birthday, this boy who just underwent his 9th surgery, happy is a HUGE shift and it hasn't gone unnoticed.

Perhaps it was that he chose the date. Ownership, a sense of control over his own life. That has to be big. Think about it. You're almost 14 and for the past six years you've been handed a bill of goods that just felt completely unfair. That just was completely unfair. Time and again you were told "You're having surgery." You had no choice. You've spent countless days in the hospital, know your way around the needles and vocabulary and procedures in the OR and anaesthesiology and the surgical ward...and you're still a kid. This was your life and yet you were dragged along on this horrible, painful ride and no one ever gave you the reins.

But this time was a bit different. Ben was away on a trip with my mom to Washington DC and the night of their return he walked into the house and the first thing he said was, "We need to schedule my next lengthening. My back is killing me. I need to do it NOW." It just so happened that I had two possible surgery dates in my back pocket (the time for the next lengthening was definitely looming, but there's always wiggle room) and I offered them up. It wasn't a great choice: October 26th (and miss Halloween) or November 28th (and have surgery on your 14th birthday). He chose the former, there was no hesitation. I scheduled it the next morning.

The next possible factor in the shift was one I made. In September I attended a talk given by Gordon Neufeld, a psychologist and parenting expert who wrote Hold on to Your Kids, one of my favorite (if not my favorite) parenting books. I've heard him before, but love to get refreshers so I went with a couple friends to listen. What I heard was so eye opening that I gripped my seat. I leaned over at one point and whispered to my friends, "I so needed to be here tonight." I knew immediately that this was the information that was missing for me.

Gordon talked about resilience in kids. He talked about what is necessary for them to learn (not just mind-know but body-know) that they will survive. He talked about frustration and futility and the tears that come with those experiences. And he talked about how important it is, as the parent supporting that child, that you allow them to feel all that hard stuff, you don't redirect them just before they hit the wall. This was the key for me. I saw immediately that what I'd been doing with Ben was holding him close and not letting him feel it. I was so sad for him, so afraid of what would happen if he felt the totality of his difficult path, I didn't actually know what would happen. I was afraid of what he would do if he felt that huge sadness. And then I heard Gordon talk and I realized that I was not allowing Ben to get through it himself. I wasn't even getting through it myself. Hearing and knowing that, I was suddenly able to visualize how Ben would survive his experience and it was such a relief. Everything shifted for me that night.

When I next spoke with Ben about his scoliosis and his upcoming surgery I didn't hide an anxiety of how he would handle it. I didn't have that anxiety anymore. I knew that he needed to have his feelings about it and having them would aid him in moving through the experience with strength and the knowledge he'd make it.

So, the days before the surgery date passed by and he was not depressed. He packed for Philly and I did not hover. We said goodbye, he had a great trip there and an even better arrival (thank you Ritz-Carlton). And the morning of the surgery he texted me from the cab, "I think my brain doesn't realize I'm about to have surgery. I'm not nervous at all," and I texted back, "I think your brain knows that you're going to be fine."

Ben got through the surgery that day with flying colors. His mood was positive and upbeat. He was up and moving around within hours of waking up and he was happy. Happy. How is that possible? I thought to myself. Happy.

He was discharged 36 hours after the surgery (we again must tip our hats to the Ritz, a better incentive to get out of the hospital there never was) and I asked him if he thought his physical therapy was at all a piece of how good he was feeling. His response: "Oh, definitely!"

The third piece. Ben started physical therapy at my request after a friend of mine whose son also is going through the procedures at Shriners told me that it was making a positive difference for her son. I thought it couldn't hurt, but it was another thing I was making Ben do (if you asked him at the time) that he wasn't happy about. For several months this year twice a week he'd work out at the PT gym, which really didn't seem like a punishment, but if you're 14 and This is Your Life and you're surrounded by grandmas and grandpas recovering from strokes, let's face it, it's not the activity that makes you say, "Jeez, I LOVE my life!" At least, not Ben.

But again, that's shifted. Several times since the surgery we've talked about how the PT made a big difference in how his body felt post-op. I can tell that Ben's attitude is different. He's gained an appreciation for it. Then last week I asked him when he thought he'd like to start back up with it (See, I'm learning! I gave him the reins!) and he said with a smile, "Well, definitely sooner rather than later."

Yesterday he told me it was time to make the appointment! Now I'm happy!

Since returning home, Ben has had 99% happy days. He has not woken up and said "My life sucks." He has not been blue. He's been moving around and playing and laughing and cracking us up.

Shift. It's like a gentle earthquake. Emotional plate tectonics. I wanted you to know.


Maya Stein said...

Oh Susie. I'm so glad to hear this. Sending love to you and the family.

Gillian said...

Susie, that is so awesome! I am so glad to read this.

Ms. Zimmer Teaches in Math Land said...

Thank you so much for sharing this intimate and fragile success. I love how the story unfolds. I love how Ben is feeing so good, and I love the imagery of "emotional plate tectonics (sp?)"
My sister-in-law recently told us of our 13 year old, " you are only as ever happy as least happy child."
Thinking of you all

Creek said...

I'm so happy for Ben and I hope the wonderful shift has held, and will hold. Time to come into his strength.