On top of the world

Ben, age 15, on top of the world.

In December Ben told us that he wanted to go skiing this winter. We were surprised and we were thrilled. This was the first substantial physical challenge that Ben has wanted to undertake since he had his first scoliosis surgery three years ago. This was a sure sign of Ben's true center breaking through, most certainly a return to himself.

Exhale. I have been holding my breath for a long, long time.

Mark had taken Toby skiing twice last winter on some homeschool ski trips arranged by a friend in our community which made this Sport of Kings affordable for us. He had planned to take Toby again this year and when Ben spoke up we gave a resounding "Absolutely!"

And then I said, "You know, you'll probably fall down a lot."
                     "And it might hurt."
                                           "And your back might get sore."

"Yeah, I'll be fine," said the boy who generally complains about back pain with any exertion involving chores.

We talked to Mark Archambault, his awesome physical therapist, and he said, "Are you going to snowboard?"

"NO," I cut in. "Too dangerous."

"Okaaaayyy," he said, sideways at me. "No moguls then."


Ben was always a physical kid. He had good balance, coordination, confidence, and the nature of a real athlete. He loved speed, challenge and almost any risky situation. He rode off into the sunset on the tiniest little two wheeler when he was just 4 years old. He didn't need the training wheels we made him use, only because his Big Brother Harry hadn't quite mastered riding the bike without trainers yet and we didn't want little Ben to show him up! Ben climbed and ran and rode and bounced. He was always active and busy...until his first bout with surgery, when he had to be in the hospital almost two months. Even then he got back to his body in the months following, He even started playing ice hockey at age 10, a sport he loved, despite the tortuous hour at which he had to go to practices (4:45 AM).

Ben, age 4 riding his little bike on the wall in Lucca, Italy.

Ben, age 11, in the yellow helmet.

But once he had his first scoli surgery and had five titanium-nickel staples inserted into his vertebrae and a titanium rod hooked onto his spine and ribcage, and once he started having surgeries twice a year and was in a continuous loop of preparing for surgery--recovering from surgery--waiting for surgery--etc., well, certain things were uncomfortable and certain things were just off limits and he became much more of a couch potato. Or at least a desk chair potato. And really, who could blame him?

But knowing what I know about him, sensing his unhappiness and dis-ease with his own body, I've found it hard to see his spirit be dormant for so long. I've suggested different possibilities: Swimming? Tennis? Hiking? But the truth is, there aren't a lot of sports he could physically manage and I believe that he has not had much trust in his body, nor the desire to feel himself in it.

Until the snow called to him.

The first trip to Sierra at Tahoe, in late January, Ben started with a three hour private lesson. "He has a lot of hardware in his back," Mark told his teacher that morning. "Oh, we all do!" she laughed, pointing to her neck and letting them know about her car accident of years before. She took good care of Ben and taught him the basics for his first day on the mountain. In the afternoon he hit the slopes with some of his buddies who had also come up for the two day trip. He came home exhilarated.

The second trip Mark played SuperDad and took five teenaged boys up to Tahoe for skiing fun. Toby and Mark skied together while Ben skipped the lesson, and went up (and down) the mountain with his friends starting the first morning. By the end of the first day he was on the Black Diamond slopes, skiing with precision, control and confidence. He was thrilled.

The third trip, well you see how this is going...My most physical of boys had found his true nature again and, as his mama, watching from the wings all these years, well, it just does my heart good.

Except for the lack of a helmet...Yeah, THAT'S gonna change next year!

Which leads me to...next year.

On April 23rd we'll be meeting with Ben's new surgeon at Shriners LA, Dr. Cho, the doctor who cared for him in November/December when he had to rush to LA for emergency surgery. We've had all his care moved to LA (so much closer than Philly and we have a whole network for support people there) and have two surgeries coming up this year. I'll know more after we see him, but from what Dr. Cho said in December, he will be removing Ben's rod first, waiting about three months, and then doing fusion.

Sigh. BIG BIG sigh.


Interesting that Ben has finally opened up to his physical spirit on the cusp of such a huge change to his physical self. Interesting that he is happier right now than he's been in years, right on the verge of his third major MAJOR surgery. Interesting that he will have to put skiing on hold, most likely, next winter, until he is through his first year post-fusion-surgery.

I can't help but think, though, that it's the best way to go into it...feeling good and moving more than ever...with a very fresh memory of the wind whipping through his hair, the sting of cold air in his eyes, and a sunburn on his cheeks. Just enough of that memory to call him back out there to reach his potential and have a real rush from life.