Tuesday, November 3, 2015

Epilepsy and Tumors

It's November. For most of Canada, that means "MoVember" mustache wearing men to raise awareness for Prostate Cancer.

For me, it means SNovember...because Winter really starts here now.

More importantly, it's Epilepsy Awareness Month which hits home as we have a Seizure Warrior in our midst. Rhett. His Epilepsy is due to TSC, Tuberous Sclerosis Complex.

Today as we drove into the city, out of the blue Rhett asks. "Mom, why did my seizures start?"
We've been very open about this so it was a bit of a surprise to hear this question coming forward from the back seat. So I explained again, about TSC and tubers/tumors.  It startled me a little to be explaining so to Rhett, as he's older and understanding more all the time. Will this increase his anxiety?

"I know I have tumors in my heart, but I didn't know about my brain."
We've always talked openly. He doesn't remember. Memory loss. Just being a kid? Seizure related? Med related? Tuber related? All, Of. The. Above.

So, we ran through the list: Brain, Face, Eye. Heart. Kidneys. But the Eye, Heart and Kidneys aren't causing any problems! Yayy!

"So you're just going to leave them there?"

Yes, Buddy, we are. That's a hard concept to grasp for adults let alone an eight year old.

It was an interesting conversation. Interesting in that the topic even came up. Why then? Interesting to hear Rhett's queries, where, when and not really why. Just where and when.

Some conversations just shouldn't be necessary with a child. However, this is our story. Rhett's story. Not all of it, but definitely a main theme.

So, here's to the Purple Epilepsy Warriors, who wonder where and when their story began too.