(And to my wonderful friends and readers)
You’re three years old now and you know what crying means. You understand the concept of sad and you know what tears are.
So when your Mommy cried yesterday after we removed your medical t-shirt that you wear under your body cast for Infantile Scoliosis, you recognized my tears and said
I’m sick of casts. This one is dirty, you’ve been wearing it three and a half months. I didn’t want to upset you, so I forced a smile and you said Mommy happy. Good job, cry! Whaaaa! Good job!
And I laughed and hugged you, getting to touch the soft skin of your belly inside the rough plaster. Your sweet belly button that is always hidden by the cast and medical T.
Then I wanted to start crying again, because I am sad sometimes and I am still angry. The anger is still there, that you could’ve, should’ve been properly diagnosed and treated earlier, younger, before the malevolent curve in your small spine got dangerously out of control.
It is now about two weeks until our next cast trip. You are currently in your eighth cast, we are going in December for number nine. Plane rides, full anesthesia, X-rays….radiation…
One precious day of you out of the cast, where I’ll examine your spine and squeeze you all day long. Soft, squishy hugs.
This is why we aren’t traveling to see my side of the family at Christmas. We did it last year between cast trips and it was draining, it was just too much.
Each cast trip is like an emotional roller coaster. The entire week before, especially five days before travelling to Salt Lake City Utah to the incredible Shriners Hospital for Children, I am on pins and needles. I try not to have any expectations, but that has proved to be impossible for me.
My heart swells with hope. I fear bad news. I pray, pray pray that your spine has gotten even a little bit better.
I tell myself it will be okay no matter what. But I don’t really believe myself.
Why is Mommy silly sometimes on her blog? Because I’m scared. Being silly and being funny is a way to lead a somewhat normal life, to be myself, to have joy and thumb my nose at the fear. It lightens me and I hope it lightens some other people sometimes, too. It may not always be everyone’s taste but that’s okay, too.
As a friend said to my husband, about going through loss and serious health problems with our children: What else can they do to us?
They meaning life.
A big reason I started this blog was to write about Bexon’s scoliosis journey. But if I make our lives all scoliosis all the time I will stop living. And that’s not good for Bex. A depressed Mom is not supposed to be on the menu for children.
Put the oxygen mask on yourself first, right? It’s good advice in all areas of life. Hard to implement, sometimes.
I’m terrified that Bex will have to have metal rods implanted in his spine at a young age, multiple surgeries with more than a 100 percent complication rate.
I’m scared of him suffering pain, deformity. My child’s spinal condition without treatment would be worse than the Hunchback of Notre Dame. He could have died.
If we ever have to face the surgeries, I’m scared my precious boy will scream in pain that no painkillers can touch. Not for a minute, for days, for a week…I’ve read the other families’ journals and stories online. They have become my friends. It rips my heart out of my chest to think of a child suffering like that.
I don’t care if I live, in times like these. But I know I want to be here for Bex.
Live through this.
Mommy I just wanna go home….Mommy I just want to see my brother…Mommy I just want to go swimming…I just want a balloon…
Brave beautiful families and Superhero children who face so much in their young lives. It’s not fair. There is a cure in Mehta Method casts but you must act fast, especially under age two.
I’m not selling anything because believe me, plaster casts are not giving anybody a world of profit. They’re mostly done at charity hospitals like Shriners. Surgery is where the money is.
If you’re reading this as a parent, please consider sharing Bexon’s Story of Infantile Scoliosis with your child’s pediatrician. They are the front lines and can help us stop any other kids like Bex from slipping through the cracks of the medical system.
Just click the Bexon’s Story tab at the top of this page.
Feel free to print it out, email it, Facebook it or forward it in any way. Pass it on and you will likely be connected to a chain of events that saves a child.
So I’m silly, sometimes. No apologies.
Dear brave Bex, my angel. This is all for you.