Monday, November 12, 2012

Mark and Ben

Ben gets ready for a poker game in the Children's Hospital PICU with Cousin Yosef, Daddy, and Uncle Barrett. The game went late but the nurses were so happy to see Ben happy that they let the guys stay one hour past Visiting hours. March 2006.

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” ~Lao Tzu

Ben and Mark went off to Philly again today. Thursday he’ll undergo his 11th surgery.


This is a minor surgery. This is a lengthening of the 17” titanium rod nestled in Ben’s back. In May, at his last lengthening, Dr. Cahill thought he hadn’t gotten much adjustment, but surprisingly achieved a 16 degree correction. In the time intervening, Ben's spine went right back to where it had been, about 55 degrees. Who knows what will happen this time? But, both Ben and I have a feeling this is the last lengthening and the next surgery will be the Big One. Fusion.

More on that later.

What I really want to tell you about is Mark and Ben.

In 2006, Ben, age 8, went into Children’s Hospital, Oakland for brain surgery and Mark insisted that he would be the parent at bedside. It was only going to be a week. I would stay at my mom's house about five minutes from the hospital. Little did we know what that would mean long term. 

What does it take to be that parent, the Hospital Parent? Mark holds his feelings in (which has it’s downsides, but in the hospital isn’t such a bad thing), can wake up and go back to sleep easily, isn’t squeamish, is good with technology, and stands his ground. He won the round. He was the best choice for HP.

As Ben’s one surgery turned into four and his one week in the hospital turned into two months, Mark learned to sleep in a hospital, which is not so different from a war zone. He spent 40 days and 40 nights at Ben’s bedside at CHO. He slept cramped onto the most uncomfortable chair bed. He was at Ben’s side during terrifying and painful nighttime procedures, he was there to chase away nurses who were insistent on bothering Ben. He was there to notify them when the IV bag seemed to have a different antibiotic in it than before…and yep, he was there when they hurriedly changed said bag for the right one. When Ben's monitors would beep and wake them up, Mark could fix that beep, he could figure out a malfunctioning monitor faster than the nurse could get there from her station. When Ben was confined to his bed and had to "go" Mark would hold the pee bottle. Together they watched ridiculously inappropriate TV (Family Guy and the Simpsons and Blazing Saddles). But most importantly, he was there, without fail, for his son in the hardest of all times we could imagine.

Ben is incredibly lucky. All of our boys are, of course. Mark is an amazing father. He is reliable and loyal and honest and generous. He’s also hilarious, brilliant, and loving. He’s responsible and dependable and clever, too. And he’s unfailing the best dad and husband I know. Yes, we are all lucky to have him.

But from one surgery to the next he has forged a connection with Ben that is unique to the two of them. Because of the difficult path Ben has to walk in his life, Mark has had the occasion to sleep at bedside many more nights at Shriners Hospital in Philadelphia, where Ben is treated for scoliosis. (You can read about it here, here, here, here and here.) He also is there with him in the hotel, where Ben recovers before returning home. The beds are without question more comfortable and the bathroom more luxurious at the Ritz. But the work is essentially the same: care unhesitatingly for his child who is in pain…again.

Years ago, after Ben had done something (now hilarious in retrospect) out of line (run away to a neighbors backyard to jump on their trampoline or cut his hair to the quick or escaped from the house to toddle down to the major busy street, you know, something like that!) Mark called his mom to tell her, “Mom, I just want you to know Ben is my payback.” She reportedly laughed for ten minutes at that. Mark was not the easiest child. His basic rule of thumb was: “Don’t ask. If you ask they’ll say no. Just do it.” And yes, that is exactly how Ben thinks.

Ben and Mark are both pragmatic. They are strategic. They have sophisticated, sarcastic senses of humor, but are also moved by stories of compassion and kindness. Lest you think Ben is hard-nosed, you should know that he loves young children and animals, is, in fact, a magnet for both. Mark is one of the few men I’ve ever known who loves babies. He loves holding them, changing diapers, cuddling them. He even loved waking in the night to hand them to me for a feeding. He was never impatient for our own babies to grow up. He would have breastfed them, if he could.

For the past seven years Mark has demonstrated one aspect of his devotion to his family by being the Hospital Parent. He holds that safe space for Ben keeping the storm at bay. Mark is there for Ben like an anchor. No matter how violent the wind and waves, Mark is security. You will not float away. You will survive this.

The first time they traveled without me I was beyond anxious. It was the first time I had not been at Ben’s side when he was wheeled into the OR. It was the first time I wasn’t with my baby as he headed into another life-or-death experience. The night before that surgery Ben called me from Philly. “Mama,” he said in a voice that sounded much younger than his 12 years. “You have to come be with me. You have to get on a plane right now and fly here so that you can be with me in the morning. I can’t do this without you.” That call chilled me. What could I do? I looked at Harry and Toby, their faces pulled with worry over their brother. Technically, I couldn’t fly there anyways, it was too late. But honestly, I couldn’t leave my other boys one more time, either.

When Ben returned from that trip he said he never wanted to do that again, travel for surgery without his mama. But, by the time the next one rolled around, he couldn’t imagine going through a surgery without Mark at his side. We can’t afford financially for both parents to go, and we can’t afford emotionally either. Someone needs to stay home with Toby and Harry. A choice needs to be made. Bring Mama who will potentially faint at the sight of an exposed surgical wound? Bring Mama who wears her emotion out in front, cries easily and…is your mama…making it possible for you to cry easily, too? Nope, better to bring Dad, the guy with all those hospital bedside skills and who keeps the mushy stuff tucked down deep inside.

Ben and Mark now have their routine, their rituals for their time in Philly. On the way to the airport they stop in Chinatown for dim sum take out to devour on the plane. While in Philly they visit Reading Terminal Market more than once for pulled pork sandwiches or Thai food or other streetfood delicacies. They watch Comedy Central, all the raunchy stuff I’d never stomach, they both love. And now, since Mark is Ben’s math tutor, they’ll work on Algebra and Biology homework as well. (Is that a downside...taking your tutor with you?)

If you saw them on the way to Philly, you’d never know they were heading to another surgery. They’re two peas in a pod. They're both flirting with the cute babies on the plane.They’re laughing and joking and side by side playing games on their phones or iPods.  Ben has grown up with Mark during these trips. Their bond is obvious.

Mark had a very strong tie with his own dad. It was not complicated or overly emotional. Mark didn’t question it, their connection was a given. Many of Mark’s incredible qualities as a father and husband are behaviors he learned from watching his dad, and some, like with Mark and Ben, seem to just be innate character traits. And that love of babies? That's something Grandpa Norman passed to his son and grandson. Such a lovely trait in a man.

What Ben and Mark have is so deep and so critical. Mark has gone to the cliff with Ben now so many times that Ben has known repeatedly the raw love Mark has for him. Ben’s most important role model has shown him unswervingly what commitment is, what love is, what a father does for his child. It is a powerful gift. And I know this: it will carry Ben through life.


Ms. Zimmer Teaches in Math Land said...

Wow. Thank you for sharing such raw emotion in a w ay that allows us other folks to have a sense of your lives that we can not begin to imagine otherwise. I hear your voice reciting to me with such certainty.

Wishes for Ben's speedy recovery and that you will all be home together soon.

mark m said...

Thanks, sweetie! You take care of the boys at home and I'll take care of Mr. B. Miss you!

Ilana DeBare said...

Beautiful. You are lucky to have Mark, but he is also lucky to have you. Thoughts with all of you this week.

Jill said...

Best wishes and much love to Ben as he heals, to Mark as he stays with him, and to you as you wait.

Gillian said...

No fair making me cry.

I hope the surgery went well, and the healing goes quickly.

Anonymous said...

Susie,What beautiful words about a lovely man and a wonderful family.Our thoughts are with you.
Elaine S.

Sue Jorgenson said...

What Gillian said. I cried at the end. This makes me think of my late dad...What a wonderful guy Mark is and how fortunate you and your sons are to have him.