When I was working in the ER, one of our “regulars” was this small girl with super curly hair, about 20 years old or so who came in about once a month for a myriad of problems.
Urinary tract infection, headache, unexplained fever, general malaise….
She had a lot going on – she had a shunt, a colostomy bag (her fecal matter left through an opening in her stomach into a bag), she straight-cathed herself (tube into her bladder to release urine), and she was in a wheelchair.
Her overall diagnosis?
At this point all I knew about Spina Bifida was what I had learned in undergrad, and in nursing school – it was when the spine of a fetus failed to close at the beginning of pregnancy, it caused the baby to be paralyzed, and it was 100% preventable as long as the mom took her prenatal vitamins.
I used to watch that girl in her room, from safe behind the windows of the nursing station. I would regularly wonder about her life.
I wondered if her mom felt terrible. She must know now that all she had to do was take a little pill and all this could have been avoided.
I wondered if the girl knew it was all her mom’s fault. I wondered if she resented her mother because of it.
About the time this girl started coming in, another girl had moved into my parents’ church, a little girl who was in a wheelchair.
My parents were asking me about her, because I was a nurse, and of course, knew everything.
They said, “I think she has like, Spina Bifida? Is that something?”
And I went on to explain what it was, with my in depth knowledge that totaled 3 “facts” including, “Oh yeah, that’s totally preventable, her mom didn’t take her prenatal vitamins.”
When Nate and I were engaged I was in a physiology class at BYU. I only remember a few of the lectures, but one of them sticks out in my mind. The professor was weird, and he had taken his shoes off. (I thought it was gross.)
We were talking about fertilization, blastocysts, embryos, and yummy stuff like that. He got to the part about closure of the neural tube, and started talking about neural tube defects. He said that when he was invited to weddings, he didn’t give flatware or china as gifts – he gave the bride a bottle of folic acid pills “because the gift of a healthy baby was the best gift there is.”
He told us taking folic acid would prevent neural tube defects.
I went out and bought a bottle of prenatal vitamins and took one every day for the next 5 years.
You can imagine my shock when during our 20 week ultrasound the Dr. started spewing out words like Arnold Chiari malformation, open neural tube defect, clubbed foot, lemon and banana sign, myelomeningocele and…
I felt like the room was spinning. I felt like I was in a tunnel, like I was underwater, like I was in a vacuum. And the only thing I could process at the time was,
but I took my vitamins….
When I explain Calvin’s diagnosis, I usually say just that: “Calvin’s diagnosis.”
Or I will say “Arnold Chiari Malformation”, or “Myelomeningocele”, or just “Myelo”. I rarely say the words “Spina Bifida”.
Rarely as in I could probably count on my fingers, MAYBE I would need my toes, how many times I’ve said it since our diagnosis last December.
I don’t even let people around me say it, and I cringe when I hear it.
All because I’m afraid someone will look at Calvin and me the way I used to look at others with Spina Bifida. (and their mothers…)
But this month is Spina Bifida Awareness month.
And there are some pretty awesome people out there encouraging others to
And so everyone, I’m embracing it.
It is really, really, really stinkin’ hard for me.
I started out by whispering “Spina Bifida” out loud when I was by myself.
Then I said it out loud to Nate. (And immediately asked him if he had noticed -he had- and if he was proud -he was.)
Then I made these adorable memes of Calvin. And it’s taken me almost a year, but I’ve decided I don’t need to wear a shirt that says,
“I TOOK MY FREAKING FOLIC ACID PEOPLE”
when I talk about “Calvin’s diagnosis”.
So guess what?
CALVIN HAS SPINA BIFIDA!
It’s not my fault, yo.
I’m embracing it.
And my formal apologies to our regular ER visitor and the little girl in my parent’s church, and of course, their mothers.
You guys all rock.
AND to the dirty shoe-less physiology professor:
You are stupid.