Did you know that approximately 1 in 10 people will experience at least one seizure during a lifetime? One seizure, however, is not epilepsy. Epilepsy is a condition that is defined by multiple seizures. It is a seizure disorder. It is not a psychological disorder nor a disease and it is not contagious. The brain is made up of billions of nerve cells or neurons that communicate through electrical and chemical signals. When there is a sudden excessive electrical discharge that disrupts the normal activity of the nerve cells, a seizure may result. Anything that injures the brain or affects its functions has the potential to cause seizures.
So many people think of someone lying on the ground in full body convulsions when they think of a seizure. I thought that too before we were introduced to them up close and personal. That is what's called a generalized tonic-clonic seizure (formerly called Grand Mal), which Taylor has thankfully never had. A seizure may take many different forms including a blank stare, muscle spasms, uncontrolled movements, altered awareness, odd sensations, or convulsions.
I've had many different feelings today thinking about seizures and their role in this journey we're on.
Gratitude being the first. Two years ago, on my Purple Day blog post, Taylor was having several hundred seizures a day. Today, as far as we know, she isn't having any. I couldn't be more grateful. It's heartbreaking to think back to when her brain was so full of chaos from constant seizures that she couldn't make any progress developmentally. I'm so grateful that we're in a different place today, thanks to Dr. Bello for bringing IVIG on as the treatment that kicked those nasty seizures out of Taylor's head. I say as far as we know, because Taylor does this weird blinking thing with her eyes that I have found suspicious for quite some time. Unfortunately she's never done it for Dr. Bello, and not for an EEG either. I have shown Dr. Bello myself what they look like and he doesn't think they're anything to be concerned about. So I'm not too worried.
Two of my friends' girls are presenting as ideal candidates for brain surgery which could potentially rid both Claire and Clare of their seizures, and take them off their meds. For that I feel so hopeful, so happy for my friends who have watched their babies endure not just too many seizures, but seizures that have affected their breathing, seizures that have needed rescue meds to stop, seizures that are too scary for any parent to witness their child have.
Through this journey I met a mom whose little girl was on a very similar journey to Taylor's. Both our girls were severely developmentally delayed with no diagnosis as to the cause of their seizures and delays. Both started with infantile spasms. Both went on the ketogenic diet. Having travelled such similar paths, Carol and I quickly became friends, and with our regular coffee playdates, Taylor and Annika did too. Not just friends though, they were kindred spirits. They were so similar, the way they moved and the way they seemed aware of each other. Even though they couldn't play like typical kiddos, they seemed to understand one another. I think they knew they were the same. Annika was Taylor's first real friend. Their similarities grew further apart in time, poor Annika suffered the most unimaginable seizures, and her little body slowly started shutting down. She passed away just over a year ago. Of all days, Annika's birthday falls on global epilepsy awareness day. She would have been five years old today. She's been in my heart and on my mind all day. I miss seeing her and Taylor on the floor together, in sych with each other, biting their arms.
Happy Birthday sweet girl, you are so loved and so missed. I know you're up there watching over your family as they celebrate you today. I love to picture you dancing in a body that's free, with eyes that can see and a voice that can sing. And maybe, just maybe, you're in a purple dress today.
