Deenie Lied, Scoliosis Isn’t Scary Anymore

This post originally appeared on Chicago Parent’s website where I am a contributor.
At the beginning of summer break, we got some news.
Our oldest daughter was diagnosed with Scoliosis.
Our pediatrician had been monitoring her spine over the past two years during her yearly appointments.
Well, when I say “monitoring”, I mean while they have them do the bend over spine test, he notated that she has a possible crooked spine and that as she got older, we would have to keep an eye on it.
It wasn’t until the last checkup in April, with a different pediatrician, that they wanted to get an x-ray of her spine.

 

My beautiful teenager has scoliosis
Our beautiful 14 year old

After the x-ray came back, the same pediatrician then told us her back was, and I quote, ” as crooked as the old Lake Shore Drive”.
Those who have lived here a while will understand that reference.
For those who haven’t, it means my 14 year old has a spine that is crooked in two places.
At the top and then again at the bottom.

This is the thing, when you look at her?
You won’t notice.
Which is probably why it slipped past us this whole time.
It wasn’t until she went in for her brace fitting, that I finally saw it.
In the position that the gentleman who makes the brace had her stand, I saw it.
Her shoulder blades aren’t the same.
And for some reason I wanted to cry, I don’t know why.
 But I am getting ahead of myself.

After the x-ray, the pediatrician told her that she needed to see a specialist.
We drove an hour on a beautiful Friday afternoon to see a Orthopaedic Surgeon who specializes in Spinal Deformity and Pediatric Orthopaedics.
When he walked in, he had an assistant and immediately I knew that it wasn’t going to be good news.

He told us that our daughter has Scoliosis.
Fine.
We already figured that after the x-ray.
I spent many an evening since the news of her” Lake Shore Drive” spine, searching the Internet.
What I was looking for, I have no idea.
My only experience with Scoliosis was the Judy Blume book Deenie.

Females who grew up in the 70’s and 80’s will remember this book well.
I was scared to DEATH that I would have Scoliosis after reading it.
Visions of a metal and wood back contraption that Deenie endured was the first thing I thought of when she was diagnosed.
Should I buy her the book?
Is it too dated?
How horrifying would it be for your mom to buy you a book from 1973 about a spinal deformity that you are just struggling to get used to?
I decided against ordering the book on Amazon and continued to do research on how bad the back has to be in order to wear a brace, how big are the braces and how long would she have to wear one.
We were given degree angles at which her curve was measured.
Under a certain angle, we knew that she might possibly get away with not wearing one.

Before the specialist appointment, Annie would come downstairs with her phone showing me the website where she found information that said she might not have to wear a brace.
We sighed a big sigh of relief, happy with our Internet prescription.
No brace = good!
We might have even gotten ice cream to celebrate.

So when the doctor told us that she had to wear a brace, we were a little floored.
Apparently our Internet research was incorrect.
Her curves are not terrible but they indeed need to be taken care of immediately.
She will be wearing a brace 16 hours a day for the next two years or until she stops growing.
The doctor and his assistant probably couldn’t tell we were floored.
We are good at hiding emotion when in a public place.
But when Annie’s eyes and mine met, we both started to cry.
“I am so sorry” I mouthed to her.

 

Scoliosis: the making of a back brace
getting ready to make the brace

 

Scoliosis is genetic.
Yet, no one that we know of, in our families has ever had it.
Or have they?
Because for some reason, Scoliosis has this stigma attached.
Why, I have no clue.
You can’t do anything to prevent it in the first place, yet the fact that she would have to wear a back brace struck horror inside her and me.
SHE IS STARTING HIGH SCHOOL, PLEASE DON’T MAKE IT HARDER ON HER BY HAVING TO WEAR A BACK BRACE.

When the doctor came in with a sample back brace, we were still in tears.
But where is the wood brace that has the metal screws up and down?
Where was the attachment for the neck that poor, poor Deenie had??
WHERE WERE THE HIDEOUS METAL PIECES???
It wasn’t bad.
It wasn’t amazingly good either but it definitely wasn’t bad.
It looked like football player’s shoulder pads only in back brace form.

 

Scoliosis: Getting wrapped for cast of back brace
getting the brace made

 

We had to go to a special brace maker at a separate appointment.
It was with a special table, three people and lots of gauze, that they created the mold that would eventually hold my sweet child for two years.
We were told that the brace won’t correct the spine, rather it will stop the curving from getting worse.
It will be worn until she stops growing.
The good news for my 14 year old?
She isn’t done growing.
She is a lot smaller than most of the girls in her class and this used to bother her.
The doctor told her that she has a lot more growing to do, so she was happy.
Silver lining.

 

Scoliosis: Making of a back brace
the cast that will be the measure for her actual brace

 

The brace needs to be worn 16 hours a day.
The first two weeks, worn only a few hours a day to ease into it.
Until she is at 16 hours a day by the end of the two week adjustment period.
She can do her sports, she can participate in gym, she can do any thing she wants.
She just can’t wear the brace when she does the above which is fine with her because she plans to only wear it at home and while she sleeps.

 

Scoliosis: What a back brace actually looks like
what a back brace looks like, not at all like Deenie’s

 

There is a “compliance monitor” in her brace.
Meaning, the doctor will know how often she is wearing it.
This is very smart because HELLO TEENAGERS.

We are a week and a half into having the brace and are adjusting.
It is an adjustment for both of us….I have to keep reminding her to put it on, I am learning how to put her in it and she is getting used to wearing it.
We are lucky that it is during summer that she has the adjustment period.
She will be wearing it all night during sleep by the time school starts in a few weeks.
And you know what?
It’s not scary anymore.
But I sure wish I had someone who I could have talked to about this whole ordeal when we were in the midst of it.
So if you know someone who has Scoliosis, send them my way.
Because we all know I love to talk.
And Scoliosis isn’t a secret.

I had a conversation with my daughter about a month into her diagnosis.
I asked her how she would feel if I wrote about it.
If she didn’t want me to, I wouldn’t.
It was completely up to her.
She said, “I am not ashamed of it so that is fine with me”.
I can tell you that when I was her age, I would never have had the confidence she does.
She is amazing and handles it with such grace, it makes me so proud to be her mom. 

12 thoughts on “Deenie Lied, Scoliosis Isn’t Scary Anymore

  1. Kari

    Hooray for modern medicine. I totally remember the back brace stories of my youth, and am always amazed how much things like this have changed and improved since then. So glad the reality was not what you feared!

  2. Kari

    My daughter has/had scoliosis (hers did end up in spinal fusion surgery at 14) and now my son will be getting his back brace on Wed. but we caught his at an earlier curvature and I learned to NOT wait on the x-ray because the outside doesn't always match the bones on the inside if there is any indication of a curve whatsoever (he's 14 and will be starting High School this year). In our case, my husband has it so we are familiar with it. It really is scary for those that don't know much about it & I'm glad you shared.

  3. Kari

    Aw, man. That's tough for a teenager entering high school. Hell, it's tough for ANYONE. She clearly has a kick ass role model in the way she's handling things!

  4. Kari

    This made me tear up. She is a wonderful, brave girl – duh, mom, it's my back, what do I have to be ashamed about? I love her spirit.

    It also made me tear up because we had a pediatric appointment a month ago where the doc sent our daughter for x-rays for the same thing. I'll keep you posted. This helped me get over the horror of hearing the s-word, and the doctor's concerned look when she delivered the news. And I didn't even read Deenie.