Tomorrow is Purple Day, a day created to increase awareness about epilepsy and seizure disorders. Chloe has epilepsy. Thankfully, her seizures (Infantile Spasms) are controlled with medication and I count that as a HUGE blessing in our lives. However, many types of seizures are associated with Infantile Spasms, and the associated seizure types usually develop later in life. In other words, just because Chloe's seizures are currently controlled does not mean that Chloe no longer has epilepsy.

Lavender is the international symbol for epilepsy.

I think this is a perfect symbol. Fragile, yet beautiful and sweet, and there are many shades of purple within the flower from very pale to very deep and dark. The darker purple colors remind me of the purple heart, an award held to honor only the bravest war heroes. I think the purple heart could also be a symbol for epilepsy. The infants, children and adults who battle this disorder are BRAVE indeed.

Informing people about Chloe's condition(s) is so important to me. I want people to understand and love her, rather than make assumptions and possibly avoid her. I follow these words of wisdom:

“Pay attention. Be astonished. Tell about it.”
~Mary Oliver

Chloe teaches so many things just by being. I feel more and more inclined, responsible even, to share every little thing that I learn from her. She truly does astonish me! Her body astonishes me! I have to tell about it. I have to let everyone know not to pity, not to be afraid, but to understand and be astonished as well. I have to.

I think the least understood part about epilepsy, and therefore the most feared, is how to react to someone when they are having a seizure. Here is a chart that simplifies things. Please take a moment to read this. If you do, then if you're ever in this situation, you can be proactive and helpful to a person with epilepsy.

Plan on more Chloe lessons coming up.
Prepare to be astonished!
And wear purple tomorrow.
For Chloe and many, many others.
Thank you!


melendez said...

I'll be wearing my Purple and so will Sirlei and her sister Eliana and her daddy.

April said...

You are both astonishing!! Chloe is truly a wonderful teacher!

Nana said...

I love Chloe lessons!