Chiari Malformation (Alternate Title: The Worst Days of my Life)

I remember the day of the phone call most clearly.
"Yes ma'am, the test results are in and the doctor would like to speak to you in person."
Can that ever be a good sign? I'm thinking no.
It had started a few months earlier. T-bone, just eight years old, had a lot of headaches. In the beginning, we attributed it to his allergies. But they got worse, and more frequent.
Then, on Thanksgiving Day, he ate heartily. He's always loved good home-cooking. But later in the day, another headache came. This one was so bad, he threw up everything he'd eaten.
These headaches were getting unusual, and seemed to be on another level.
There were other symptoms too, but by themselves didn't seem terribly alarming; numb/tingling fingers, and visual oddities.
The doctor recommended a CT Scan, "just to rule out any problems". So he had the CT, but the doctor reassured me that it was probably indeed just his allergies and/or something viral.
Until that phone call.
I had just iced cupcakes for Ladybug's birthday. I was taking them to her class. I managed to call the kids' father (my now-ex husband) and told him to meet me at the doctor later. Then I managed to smile and fake it through Ladybug's classroom birthday party. Meanwhile, I felt like my whole world was falling apart, and any time I had a moment to think, I prayed, Please God don't let it be cancer. Please God, take me, not him. I was horrified. My first thought was inoperable brain tumor. Because that's how my brain works.
The news was not that bad, but still terrifying. They suspected Chiari Malformation. A term I'd never heard before, but would run through my mind constantly for the next several months. They wanted to do an MRI. If they were correct, he would most likely need neurosurgery.
Brain surgery.
My little boy, my firstborn child, still (always) my baby.
I didn't even have the internet back then, so I hit the library. I researched and printed pages and pages of information.
Then I went home and cried.
I knew in my heart that he had it. And I learned that it wasn't something that surgery would magically fix forever. It was something he could deal with, to some extent, for the rest of his life.
I cried out of fear, sadness, and guilt. What did I do wrong, to cause him not to develop properly in the womb? I thought I'd done everything right; I ate right, took my vitamins, everything. But I was sure I'd done something wrong, to cause this.

to be continued.......

Part II


Soliloquy said...

I'm listening. I have no idea where the story goes from here.... but I hope it helps you to get it all out.

I'm here. Waiting for you to be ready to share more....

Insane Mama said...

Oh my god! The fear that must have brewing in your head! I can't imagine

DysFUNctional Mom said...

Thanks, Sililoquy. It's just too long of a story, and too hard to write, to get it all down in one post.
It has a happy ending, though. :o)

Momo Fali said...

Ack! To be continued?! No fair!

My son was born with multiple defects (heart, eye, stomach, kidney), and it was attributed to a bacterial infection I had when I was pregnant. I know how it feels to ask "what if" all time. Maybe if I had washed my hands more, maybe if I hadn't gone to that big Christmas party around all those people (and germs). It took me a long, long time to accept that it wasn't my fault. This isn't yours either.

Sue said...

A what? I went to the link. That sounds pretty scary. *hugs* And you made it 'to be continue...'? I hate that. heheeh. You sure now how to keep us around, huh? *more hugs*

Tara R. said...

Darlin' ... I cannot imagine what you were going through. Now, I have to come back to read the rest of the story.

Kel said...

I'm sorry to hear that you went through this ... I can't begin to imagine, but I hope the ending is much brighter than the beginning.

Michelle said...

I am so sorry.
I can relate. My son (who is now 7) was born bi-lateral cleft lip / bilateral cleft palate. We found out when I was 20 weeks along.
They (the doctors) keep saying I did nothing wrong. I ate right, exercised, took my vit. It is hard not to feel guilty.

Guilt is an ugly emotion. I hope you feel better soon.

anymommy said...

Any parent's worst nightmare. I'm so sorry - and I'm so relieved to see in your comment above that he is all right. I still wait for the end of the story.

Alison said...

you can't leave us like that...next chapter please!!!

sogratefultobemormon.wordpress.com said...

hi C ~
i'm listening. keep going. ((hugs)) beany

Ness said...

Thanks for sharing your story. I look forward to continuing chapters. We can never learn enough about things that can happen to our bodies. You are a very strong Mom and I'm sure his success with this had to do with the strength and love you provided him with.

Groovy Mom said...

Oh man. It's every parent's nightmare, isn't it? Having something threaten the health and life of our children. I'm hoping all is well now.

Sandy C. said...

Oh goodness! On the edge of my seat here. You poor thing. Every parent fears this scenario.

Kimmylyn said...

I too am on the edge of my seat.. I can't even imagine how scared you had to be in those early days.. I will be waiting patiently for the next installment.