@BraveBenE

Ben at Sandbridge Beach, VA, 2 days after learning that spinal fusion surgery was coming up

Ben hasn’t had surgery since November 2011—almost 1.5 years ago. 2012 was a surgery free year! But on April 4, 2013, that will all change, when Ben undergoes insertion of growing rods along his entire spine to help address his severe scoliosis resulting from Schwartz-Jampel syndrome.

Over the last 10 years, Ben has been cared for by Dr. Emans, Spine Director of the Orthopedics Department of Boston Children’s Hospital. Each year Dr. Emans would examine Ben and say “the curve isn’t bad enough, but when it gets to be 55 degrees curved, we’ll have to talk”.

On August 10, 2012, when Sherin and Lucy were on a plane home from their fairytale Olympic London trip, I was with Ben and Dr. Emans looking at some pretty curvy x-rays of Ben’s vertebrae. Dr. Emans announced that the curve was now 61 degrees. He said “I don’t want to do this surgery, but I have to do this surgery”. It sounded all very non-negotiable.

But negotiate I did. Ben was about to start 6th grade and a new school. In our public school system, this is the biggest transition in K-12. We have 7 elementary schools that feed into one middle school at 6th grade, which then feeds into one high school in 9th grade. I knew how important it was for Ben to make a good first impression with his new classmates and friends. I didn’t want him to be the sick kid who would have a significant surgery right after school started and miss 2 months of school.

So I used the social-emotional development argument, and with a strong pulmonary function test (PFT) result in hand, we got the blessings of both Dr. Emans, and pulmonologist Dr. Haver, to wait until Spring. Dr. Haver insisted the surgery take place after March (all that influenza in hospital would not be a good thing for a surgery where one of the biggest risk factors is pneumonia)—but Ben also argued that he wanted to come back to school after the surgery. Since school was slated to end on June 26, we agreed that April 4 was a reasonable date to meet all these needs.

I was warned that this delay would lead to further spine curvature that could affect Ben’s lungs permanently—and indeed, his curve is now at 70 degrees—but it was a risk I had to take. The most recent PFT has shown the same results from August, so whew, I escaped the bad guy role on that one.

We gave ourselves permission to not think about this surgery until January, but since the first of the year, we’ve been making plans with Ben’s school, our work, and Ben has been undergoing many exams to get ready. His last exam is March 26—to check on the hips, which the rods in the spine will most definitely impact—and then voila, it will be April 2, my last day of work; April 3, Ben’s last day of school, and the day that Lucy and Charlotte go off to good friends’ houses for 2 days; and then, sigh, April 4.

Once again, we will find ourselves in that incredibly awkward position, of being upbeat and positive at 5 am as we drive to Boston, meet with the team, have casual banter with Ben and his surgeons (because the ophthalmologist and ENT will also do some relatively quick procedures at the same time), providing reassuring, calming and loving words to Ben as he undergoes anesthesia in the OR, silently but fervently uttering massive prayers for Ben and the wonderful, dedicated hands who will be taking care of him, and then waiting. Agonizing wait. 6 hours of wait. Oh, God, I dread that wait. All the while knowing the risks, the uncertainties of the success, and dealing with the knowledge that we are setting him up for repeat spine surgeries every 6-9 months, where the rods can be cranked to allow for additional spinal growth, until he finishes growing. And, at that time, another significant spinal fusion to end it all.

Writing is very therapeutic—just read Jamie Pennebaker’s work—and for this surgery, I plan on doing therapeutic and informational tweeting. Let’s see how succinct I can be as we update you on Ben. Follow us @BraveBenE while we give you our 140 character updates on happenings, thoughts, feelings, and more. It’ll be easier than signing in to Ben’s CarePage, and we can leave Facebook for the fun things. And tweet to us too—it will cheer us up!

And if you’re wondering why I am posting this when the surgery is still 12 days away—I’m traveling for work right now and have more time than I will next week when I take over being the solo parent. I always get more done when I’m out of the house! Plus I want to give you all time to connect with @BraveBenE on Twitter. Thank you!

13 Comments

Andrea Ghose posted on March 24, 2013 at 12:35 pm

Thank you for your detailed update on Benny’s sceduled surgery. We also are very glad that the surgery could wait until April. What a terriffic start Ben got in Middle School, and all thanks to his more than terrific parents! Love you all.

Mary Katherine posted on March 25, 2013 at 8:02 am

Thank you so much for sharing another leg of your maternal and family’s journey – as Holy Week begins for the world – and your family. I am reminded in your story that almost every “problem” I claim pales in the face of a child and mother bravely facing yet another real challenge. Thank you, Rani, for serving as a continuing model of motherhood and faith. Your family will be in my thoughts and prayers – and if I can get my electronic act together – we’ll be tweeting too!

Rani Elwy posted on March 27, 2013 at 6:25 pm

MKQ–the Holy Week theme of all of this anticipation of suffering is resonating deeply with me. Your posts always cheer me up and calm me down. Thank you for all your love and support!

Rani Elwy posted on March 27, 2013 at 6:26 pm

It’s been a terrific year so far, and we can only hope that this is just a blip that will be overcome. Much love!

Peggy Pinter posted on April 4, 2013 at 6:10 am

As you know, we love your entire family. Our family sends our thoughts and prayers on this very stressful day.

Rani Elwy posted on April 5, 2013 at 10:38 am

Peggy and all of Pinter family, thank you for your friendship and prayers! Those prayers are working!

Roberta Maguire posted on April 7, 2013 at 6:44 pm

Thinking of you all and hoping all is going smoothly.
Big hugs!

Annie Brummer posted on April 20, 2013 at 11:31 am

Our extended family sends our thoughts and prayers to you, Rani and Ben. After we connected, I sent your blog to fifty family members/close friends. They all love our Jack ( also has Schwartz-Jampel for those who are unaware )… so now you have a whole new group of great people pulling for you and Ben. How ironic that we also went through this major scoliosis surgery with Jack’s older sister, Maggie. Her surgery was in Aug. 2011. Today, she’s playing lacrosse. Take heart – Ben will heal quickly with your good care. All best – Annie

Rani Elwy posted on April 22, 2013 at 10:40 am

Thank you Annie! I have been amazed by Ben’s healing process–see today’s blog post! It’s been wonderful to connect, we can’t wait to meet you, Jack and your family in the hopefully near future!

Ranjana Banerjea posted on April 25, 2013 at 2:30 pm

Sending you, Ben and your family lots of good wishes and a speedy recovery for Ben. It was so heartwarming to read your posts. His moustache makes him look very cool in the other picture.
Love to you all.

test1 posted on November 11, 2017 at 1:23 pm

Have you ever thought about publishing an e-book or guest authoring on other websites? I have a blog based on the same subjects you discuss and would really like to have you share some stories/information. I know my viewers would value your work. If you are even remotely interested, feel free to shoot me an e mail.

child posted on August 29, 2019 at 7:44 pm

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Tinisha Verlinden posted on December 14, 2019 at 5:31 pm

This article proof that there are writers who really care about the quality of content they share. Thank you for being this kind of writer.

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