October is Spina Bifida Awareness Month and October 25 is World Spina Bifida and Hydrocephalus Day. In the days leading up to the celebration and throughout the rest of the month, we'll be sharing the stories of Gillette patients who have Spina Bifida and the Gillette specialists who treat them.
Gillette Children's is a national and regional leader in the diagnosis, care and treatment of spina bifida. For more information about the condition and the treatment provided at Gillette, please visit our website.
It’s funny, you never know at the time when you’re living the day that will change your life forever. But that’s what happened to me four years ago.
I work in Community Engagement and Events for the Minnesota Twins and I was volunteering at an event Joe Mauer was hosting for Gillette Children’s. I saw a little boy sitting by himself on the ground and I sat down next to him. He turned and said: “Hi, my name is Bennett and I love dinosaurs.”
I fell in love on the spot.
He asked me to pick him up. So, suddenly, there I was, holding a child that I didn’t know when his father, Jon, introduced himself. That’s when Jon explained what I didn’t know at the time: Bennett has a medical condition called Spina Bifida.
We all had a good time at the event that day and Bennett delivered the game ball to the mound before the Twins game that evening.
A week later, a thank you card from Jon and Bennett arrived that said: “Thank you for everything that you are, and everything that you did.” Jon and I kept in touch and a year later, we were engaged.
We had our wedding at Target Field, and Bennett walked me down the aisle. That night, we had our reception in the same room where we all met for the first time.
If all of this sounds serendipitous, frankly, it should. But the fact that Bennett was able to walk me down the aisle at all, is the miraculous part. When Bennett was born, doctors told his parents that walking was something he’d never be able to do.
Of course, that was before they got to Gillette.
Bennett is now 7 years old and in those seven short years, he’s had 14 major surgeries. In addition to his spina bifida, he also has Hydrocephalus and Scoliosis.
Jon, Bennett’s mother Jill, and I work together to make sure that Bennett gets the best care possible. We count ourselves fortunate to have a hospital like Gillette in Minnesota.
Bennett’s doctors and therapists, especially Dr. Walter Truong and Dr. Peter Kim are all incredibly knowledgeable, kind, and 100 percent committed to the health and well-being of their patients. We don’t know where we’d be without them.With that said, caring for a child who has a disability isn’t always easy. To our family, spina bifida means that every day we help Bennett take care of his basic needs. It means things like catheters, medicine, diaper changes, adjusting chest and leg braces, changing bandages, caring for sores on his feet and a daily enema.
It means occasionally getting odd looks and inappropriate questions on the playground. It means that we spend far too many moments advocating for our son to be included with everyone else, when you’d think that’d just be the expectation.
We’re obviously biased, but anyone who has spent five seconds with Bennett and seen his million-dollar smile would tell you the same. After all, that’s what happened to me.
It was an event for Gillette that brought us all together and because of Gillette, our son is able to play baseball, wheelchair basketball, participate in Boy Scouts, help out on the farm at home, be a big brother and basically, just be a kid.
Bennett gets to be who he is and for that, we are forever grateful. The rest of the world should be too. Just wait until you meet him!
This was originally posted in 2018. Since then, Bennett's had several other surgical procedures, most recently Single Event Multilevel Surgery (SEMLS) at Gillette in April of 2021. His parents say that as always, Bennett rocked his surgical recovery and the therapy that followed. He got back on his feet quickly and had a very active summer. All is well.
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