October is Spina Bifida Awareness Month.

It seems appropriate to me that October is Spina Bifida awareness month. Every year on October 25th I am catapulted back to my (former) OB's office and hearing the words "Spina Bifida" for the first time as they related to our unborn son. I can still hear the words as if it were yesterday ... “Ms. Hinson – I am so sorry, but your son has Spina Bifida and after reviewing your son’s ultrasounds we just don’t like what we see.” I listened carefully as my doctor began lots of sentences with “Henry will never, Henry may not and Henry just won't be able to ________ ”. What was I supposed to do with that? I didn't really know where to begin or what questions to ask. All I knew was that Henry was our child and we were going to fight for him, to love him and believe without any doubt that Henry’s life has purpose regardless of the "would nots".  So I walked out of his office that day with tear stained cheeks and a mission to learn everything I could about this child we had been given.

So I did what "they" tell you not to do - I googled Spina Bifida. If you have ever tried to use
Google to deliver a diagnosis well then you know I was convinced Henry was going to be born with 3 heads, 12 fingers and may or may not have looked like a velociraptor. We'll blame that all on the hormones.

We were eventually invited to a playgroup with a local Spina Bifida organization and it was really remarkable, but what was so remarkable about it is that it was unremarkable. Parents were sitting around a table lamenting about the latest annoying theme song to their child’s favorite show, a mother was talking about how she had just purchased new shoes for her son only to watch him out grow them 3 weeks later, they talked about their summer vacation plans and their daughter’s latest doctor’s appointment.

As I listened to them I watched their children laughing and playing around the perimeter of the room. These kids were doing all the things that doctor had told us just weeks before Henry would never do.

Being in that room that day with that group of parents and their children gave me the greatest gift for Henry. They gave me an attitude adjustment because it became very clear to me watching these children and listening to their parents that doctors can be wrong.  Yes, he has Spina Bifida, but Spina Bifida is never going to be the coolest thing about Henry Hinson.

Henry is almost 3 now and the learning curve has been steep for Nathan and me for sure. The day Henry was born I didn’t just gain the title of Henry’s mom, I became Henry’s nurse, his advocate, and got a crash course in medical school.

He has had a total of 13 surgeries (number 14 is scheduled for Oct. 29), 27 plus trips to the Emergency Department, 20 hospitalizations, and countless visits to see his pediatrician above and beyond what would be standard; my husband and I have a running joke with Henry’s pediatrician, that room number 3 is the Hinson timeshare. So if ever you take your kids to KCMA Breckenridge ask for room number 3 and the visit is on us!

I know this sounds like a lot, and believe me some days it is, but I don’t tell you all of this to make you feel sorry for us because most days my family is living life like just like your family. Having Henry has just meant that we adjusted to a new normal; we live our lives around cathing schedules, doctors’ appointments, and trips up and down I-71. Yes we spend a lot of time at Cincinnati Children’s Hospital, but because of that we also get to spend a lot of time at IKEA and eating Dewey’s pizza!

Please don’t miss what I said -- I said we are living our lives. We are laughing, we are finding joy in watching our boys become brothers, we watch Oliver make Henry laugh so hard we have to take Henry into the next room so he can catch his breath, and we celebrate milestones like you wouldn't believe.

Having a child who has Spina Bifida hasn't turned me into some superhero mom. Most days I am like any other mom raising two boys, my feet hurt, I have dirt in my hair, ketchup stains on my brand new white shirt and I probably ate a cold dinner. Some nights I get to my pillow and I think somewhere in the ceiling there should be confetti cannons going off and a cheering squad chanting “you did it sister, you did it! You made it through this DAY!!!”

Henry is a happy little boy who is figuring life out and adapting where he needs too. He isn’t walking quite yet, but he wheels around in his ZipZac wheelchair like he is Mario Andretti looking for a checkered flag, he goes to a normal preschool and learns like everyone else in his class, he is even learning to throw tantrums when he doesn’t get his way.

People often ask me if I had the opportunity what would I say to that doctor now? Well I think I would tell him that with new advancements in medical technology, new therapy techniques, protocols, and advances in surgical procedures there is no room for the small mindedness of delivering the diagnoses the same way it was delivered 60 years ago. These advancements are making it possible for those living with Spina Bifida to have full active lives.   They can run on a cross country teams, they can become lawyers, or a XGames celebrity because they can do big tricks in their “wheels”, they can dance, they can sing, they can become doctors, professors, mountain climbers... they can do this because they can and will go #beyondlimits.