Purple...

...it's more than just a colour to us. March 26th is Purple Day, the global day for epilepsy awareness. Taylor is joined by over 65 million people worldwide who suffer from epilepsy. That's an awfully large number. We all wore purple today, here's pics of the girls...

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.

Be Aware

I'm going to share a post with you that I recently read by Kelle Hampton, a blogger I follow enthusiastically, whose youngest daughter has Down Syndrome. When I read her post on World Down Syndrome Awareness Day, what she said really resonated with me. While most of the following words are Kelle's, they are also very, very much mine.

Having a child with special needs, I am consequently more sensitive to degrading words people use—words like retarded. I’ve used it in the past—not purposefully meant to degrade, of course—but in passing when I’ve done something without thinking. Or in referring to something completely ridiculous. It’s amazing how many times I’ve heard this word since Taylor's journey began—usually thrown out in the same way, not meant to demean anyone, and it has taken me awhile to figure out how I feel about it. Obviously, yes, it’s a word that is used frequently to degrade people with disabilities and for this reason, it shouldn’t be a part of someone’s vocabulary as a silly way to refer to yourself when you’ve mindlessly attempted something. There are campaigns within the special needs community to end this word, and I join them because I support this cause not only for my child, but for others’ as well. But the word exists, not only as a demeaning term, but as a medical expression too. And I am informed of what it really means—before society notoriously went and made a mess of it. With that said, the word “retarded” means slow or limited in intellectual or emotional development.

My point is, throwing out “the R-word” is usually done in ignorance, and the fact that the word used inappropriately is meant to refer to a lack of intelligence is well, ironic. So, I guess this is all suffice to say, out of kindness and respect for everyone and the way this word is degradingly used, please remove the existence of this word from your vocabulary and teach your children to do the same.

Pay attention to the person, the child, the soul—not the wheelchair, the difference. Allow yourself to be astonished—to learn something new from someone, to be inspired, to laugh, to enjoy a moment. And then pass it on. Spread your awareness message by the way you live, the way you speak and the way you treat people.

I know what it feels like to be the mother of a special needs child, and it is in that role that I have felt fueled to advocate more fiercely for her rights. Sometimes it takes wearing the shoes or wondering what it would be like to wear the shoes of a tsunami victim, a mother with cancer, a soldier's wife, or the parent of a child with a special need to force us to be more compassionate. A child must understand the concept of "self" before he learns to share; so it is a person must wonder what it would feel like to personally experience something to be truly altruistic. I hope that reading this blog has perhaps allowed you to feel the challenges and joys of raising a child with special needs. And, in doing so, I hope you are more aware of every individual's capabilities and maybe, your own as well. Thank you again for reading, for sharing, for being part of our journey.

Purple Day!

We made Purple Day proud people!

What is Purple Day you ask???

March 26th is the annual global awareness day for epilepsy. The day was founded in 2008 by a nine-year-old girl named Cassidy Megan from Nova Scotia. Motivated by her own struggles with the disease, she started Purple Day for Epilepsy in an effort to educate others about the disorder, and to remind those living with seizures that they are not alone. Cassidy named the day after the internationally recognized colour for epilepsy – lavender. As a result, on March 26, people around the world wear purple in support of the disease – which affects nearly 300,000 people in Canada and more than 50 million people across the globe.

That's way too many people suffering with seizures if you ask me. Taylor has hundreds of the nasty little buggers every single day. We don't like it, but we live with it, and we've gotten stronger as a family because of it.

So we took Purple Day by storm in our house! We all wore purple. Purple plastic tablecloth over the island. Purple balloons. Purple cake. Purple cookies. Even hung purple paper chains that Marissa and Daddy made together. It's fun being purple, and we just so happen to think it's Taylor's colour.