Purple Day

There are so many proud moments from Purple Day.

First...Warner explaining to a new friend why he there is a purple brain on his t shirt. As only a 7yr old brother can explain about "tricky brains" and seizures.

Second....to sit at the back of the classroom & witness my sweet, usually shy 5yr old stand beside his teacher....well, lean on her knees & sometimes melt into her......witness Rhett sharing why he has a purple brain on his tshirt, what the purple world pin is for, "tricky brain", "wiggly hand", purple means Epilepsy"....and hand out purple balloons to his classmates.

A surreal moment.
A moment filled with pride.
A moment filled with the heartache that its just wrong that this is Rhett's reality.
A moment filled with gratitude that he can share with his Kinder class.
A moment that "warms my heart"

Spread the Purple Love!
Have you been over to Danielle, Heather & Christy's blogs?

Check out the Purple Mommas' blog list on the side bar. It's growing!

Bare Naked Noggins Picture Marathon

Bare Naked Noggins Picture Marathon

Another Bare Naked Noggins Success!

Thursday at the BNN event was so fun!
And emotional.
Even though Bup is doing well, it's still emotional to talk openly & publicly about living with seizures.
Plus, this year was even more heartsy as Melanie was missing. Our "amazing grace" Melanie who was filled with love and laughter, sunshine and energy, missing from the BNN that she so diligently and lovingly organized. As fun as Thursday was, it just wasn't the same without her. As one participant said, "Melanie is applauding us from wherever she is."...and we applaud you Melanie Grace Burnell! Miss you!

Arriving with bright purple-people-eater hair was so hilarious! There were cries of "Look at you!" and hugs, and laughter and shock from flashes going off and more laughter. So fun! So worth the effort and shock of my FH to go purple!

Collectively the BNN participants raised over $40 000!! Wuhoo!!! All funds go to the local Epilepsy office and are used strictly for educational programs to teach awareness about Epilepsy. Awareness is necessary. People are still in the dark...as is Epilepsy. Just last weekend I had a lovely young adult ask me "What is Epilepsy? I've heard of it...but have no idea what it is."

I think I'm going to create a pin/button that says, "Ask me why I"m bald." The key is to keep people talking...raze that awareness level.

Lastly, but oh so importantly.....a huge thank you and hugs all around for those that supported me in spirit, presence and sponsorship. Your caring means the world to me. Really. It gave me a sense of pride to look into the crowd on Thursday and see smiling faces that know me personally. To come downtown, in the middle of a week day, some with children in tow, is a HUGE effort. I recognize this and am so grateful to you! Then there's the other sweeties that opened their wallets to sponsor me. Again....gratitude is shining from me onto you right now! Not to forget those that sent me words of encouragement. Those kind words are what kept me on the stage...not running in fear from the buzz of the razor.

Many thanks and many hugs to you all.

*pictures to follow...*

Another Bare Naked Noggins Success!

Thursday at the BNN event was so fun!
And emotional.
Even though Bup is doing well, it's still emotional to talk openly & publicly about living with seizures.
Plus, this year was even more heartsy as Melanie was missing. Our "amazing grace" Melanie who was filled with love and laughter, sunshine and energy, missing from the BNN that she so diligently and lovingly organized. As fun as Thursday was, it just wasn't the same without her. As one participant said, "Melanie is applauding us from wherever she is."...and we applaud you Melanie Grace Burnell! Miss you!

Arriving with bright purple-people-eater hair was so hilarious! There were cries of "Look at you!" and hugs, and laughter and shock from flashes going off and more laughter. So fun! So worth the effort and shock of my FH to go purple!

Collectively the BNN participants raised over $40 000!! Wuhoo!!! All funds go to the local Epilepsy office and are used strictly for educational programs to teach awareness about Epilepsy. Awareness is necessary. People are still in the dark...as is Epilepsy. Just last weekend I had a lovely young adult ask me "What is Epilepsy? I've heard of it...but have no idea what it is."

I think I'm going to create a pin/button that says, "Ask me why I"m bald." The key is to keep people talking...raze that awareness level.

Lastly, but oh so importantly.....a huge thank you and hugs all around for those that supported me in spirit, presence and sponsorship. Your caring means the world to me. Really. It gave me a sense of pride to look into the crowd on Thursday and see smiling faces that know me personally. To come downtown, in the middle of a week day, some with children in tow, is a HUGE effort. I recognize this and am so grateful to you! Then there's the other sweeties that opened their wallets to sponsor me. Again....gratitude is shining from me onto you right now! Not to forget those that sent me words of encouragement. Those kind words are what kept me on the stage...not running in fear from the buzz of the razor.

Many thanks and many hugs to you all.

*pictures to follow...*

Perfectly Purple for Epilepsy

Ta Da!!

Here it is...my purple debut and oh so much brighter in person. I love it!

Luckily for my husband, I didn't try this sooner as I could easily have gotten into changing my hair color drastically and regularly. Ya gotta love Paintbox's Blueberry Hill!

"15 again, Mrs. M?"

Naw. See as I'm fundraising for Epilepsy's Bare Naked Noggins Head Shave in honor of our little man Bup and do not have long hair this year, I thought something vibrant and a little surprising was in store, hence the purple locks.

"Why purple? Why not something more mainstream...like auburn?

Purple is the signature color of Epilepsy so it's fitting.

My collas are purple passion and lavender.

Your colors are purple and purple!

My collas are purple passion and lavender!

Remind you of anything?

By the way, if you'd like to support my cause/Epilepsy please visit the Bare Naked Noggins web page and sponsor me...any little bit is a huge help. And if you're in the area next Thursday, the 19th, come on down to Banker's Hall and cheer all of us participants on as we are shorn in the name of "razing" awareness for Epilepsy.

Perfectly Purple for Epilepsy

Ta Da!!

Here it is...my purple debut and oh so much brighter in person. I love it!

Luckily for my husband, I didn't try this sooner as I could easily have gotten into changing my hair color drastically and regularly. Ya gotta love Paintbox's Blueberry Hill!

"15 again, Mrs. M?"

Naw. See as I'm fundraising for Epilepsy's Bare Naked Noggins Head Shave in honor of our little man Bup and do not have long hair this year, I thought something vibrant and a little surprising was in store, hence the purple locks.

"Why purple? Why not something more mainstream...like auburn?

Purple is the signature color of Epilepsy so it's fitting.

My collas are purple passion and lavender.

Your colors are purple and purple!

My collas are purple passion and lavender!

Remind you of anything?

By the way, if you'd like to support my cause/Epilepsy please visit the Bare Naked Noggins web page and sponsor me...any little bit is a huge help. And if you're in the area next Thursday, the 19th, come on down to Banker's Hall and cheer all of us participants on as we are shorn in the name of "razing" awareness for Epilepsy.

1 Year & counting...

This post has been on my mind for some time. Hoping it would come to fruition and now that it's here...wanting to write yet not wanting to jinx things.

October 13th 2008...that was the date of Bup's last seizure. It's one year!!! Tuberous Sclerosis and seizures have nothing on us!

This anniversary brings up so many emotions. We are absolutely thrilled that R's meds are continuing to work. He takes Trileptal and Keppra twice daily, which is disguised in a bottle of milk or juice because there is no other way to get him to take it without a fight, tears and a lot of wasted meds. There has not been even one break-through seizure while on this current dosage... not even when he's had the stomach flu and isn't getting his meds. I can't even explain, or convey how much of a relief this is to us...to go a full year without a seizure. It's been so long that recently W asked, "What's a seizure?". B & I were talking about seizures and W didn't remember what they were. This from the little guy who would call me when he noticed that R was having a seizure...also the little man who would pretend to have a seizure once they had finished knocking Bup on his cute little bottom.

You see, our little babe Bup had seizures daily, starting at the tender age of 8mths. Several times a day. At best, when only taking Trileptal, he was down to 9 seizures a day and they were getting more fierce. Knocking him down, his breathing had changed during the seizures...very heavy & rough, almost like snoring, he couldn't respond to you, the tremors had surfaced, his right arm would go stiff and there were times that he wouldn't use his right hand/arm following a seizure for an hour or so. It was frightening to watch them progress in strength knowing that one day soon they would become "grand mal" (to use the old language that everyone knows). I had even discussed with our Neuro nurse about getting a helmet for Bup because he kept hitting his head during seizures and had even had a couple at the head of the stairs...and in the tub which isn't about a helmet but more like a life jacket! Having these seizures halted is such a relief to our hearts. Once they stopped it was as if Bup's development received a kick-start. His speech started progressing in leaps & bounds, as did his gross motor skills....the poor coordination decreased. Again...more relief and pride surging for us.

So, it's a fabulous day in our home!

Now, why would this bring about different emotions for me?
Well, fear I guess.
Fear that it'll all come back. Don't borrow trouble! I know, I know...I tell my head this often.

Then there's a sweet little curly haired 2yr old south of the border who just under went neuro surgery to eradicate the seizure monsters...he was once seizure free too...and now here he is fighting to recover and repair...all due to the dreaded seizure monsters. It really tears at my heart...and he's not even mine! How can one not be affected in some small way though?

For now, I shall put away the guilt, put away the fear, and embrace the relief and happiness of our Bup living daily seizure-free.

1 Year & counting...

This post has been on my mind for some time. Hoping it would come to fruition and now that it's here...wanting to write yet not wanting to jinx things.

October 13th 2008...that was the date of Bup's last seizure. It's one year!!! Tuberous Sclerosis and seizures have nothing on us!

This anniversary brings up so many emotions. We are absolutely thrilled that R's meds are continuing to work. He takes Trileptal and Keppra twice daily, which is disguised in a bottle of milk or juice because there is no other way to get him to take it without a fight, tears and a lot of wasted meds. There has not been even one break-through seizure while on this current dosage... not even when he's had the stomach flu and isn't getting his meds. I can't even explain, or convey how much of a relief this is to us...to go a full year without a seizure. It's been so long that recently W asked, "What's a seizure?". B & I were talking about seizures and W didn't remember what they were. This from the little guy who would call me when he noticed that R was having a seizure...also the little man who would pretend to have a seizure once they had finished knocking Bup on his cute little bottom.

You see, our little babe Bup had seizures daily, starting at the tender age of 8mths. Several times a day. At best, when only taking Trileptal, he was down to 9 seizures a day and they were getting more fierce. Knocking him down, his breathing had changed during the seizures...very heavy & rough, almost like snoring, he couldn't respond to you, the tremors had surfaced, his right arm would go stiff and there were times that he wouldn't use his right hand/arm following a seizure for an hour or so. It was frightening to watch them progress in strength knowing that one day soon they would become "grand mal" (to use the old language that everyone knows). I had even discussed with our Neuro nurse about getting a helmet for Bup because he kept hitting his head during seizures and had even had a couple at the head of the stairs...and in the tub which isn't about a helmet but more like a life jacket! Having these seizures halted is such a relief to our hearts. Once they stopped it was as if Bup's development received a kick-start. His speech started progressing in leaps & bounds, as did his gross motor skills....the poor coordination decreased. Again...more relief and pride surging for us.

So, it's a fabulous day in our home!

Now, why would this bring about different emotions for me?
Well, fear I guess.
Fear that it'll all come back. Don't borrow trouble! I know, I know...I tell my head this often.

Then there's a sweet little curly haired 2yr old south of the border who just under went neuro surgery to eradicate the seizure monsters...he was once seizure free too...and now here he is fighting to recover and repair...all due to the dreaded seizure monsters. It really tears at my heart...and he's not even mine! How can one not be affected in some small way though?

For now, I shall put away the guilt, put away the fear, and embrace the relief and happiness of our Bup living daily seizure-free.

World Epilepsy Day

The boys and I had a super time at our City Hall adventure for World Epilepsy Day - Purple Day. Riding the train was a hit for the boys as well as the bags of mini Oreos.

Which is a partial reason as to why Bup's little chocolate face was an attraction while waiting for the festivities to commence. Unfortunately I brought the wrong camera...one with a dead battery so there are no pics.

The mom who spoke was very heartfelt and moving as was the 12 yr old girl who lives with Epilepsy and is an avid volunteer at EAC. What a girl! She's amazing!

May today and the precedent that is set brings Epilepsy out of the dark and comfort to those who are affected.

Here's the little man we wear purple for.

Wear your purple proudly.

Heartfelt thanks to those of you who do!

Hugs,

Bup & the rest of us

World Epilepsy Day

The boys and I had a super time at our City Hall adventure for World Epilepsy Day - Purple Day. Riding the train was a hit for the boys as well as the bags of mini Oreos.

Which is a partial reason as to why Bup's little chocolate face was an attraction while waiting for the festivities to commence. Unfortunately I brought the wrong camera...one with a dead battery so there are no pics.

The mom who spoke was very heartfelt and moving as was the 12 yr old girl who lives with Epilepsy and is an avid volunteer at EAC. What a girl! She's amazing!

May today and the precedent that is set brings Epilepsy out of the dark and comfort to those who are affected.

Here's the little man we wear purple for.

Wear your purple proudly.

Heartfelt thanks to those of you who do!

Hugs,

Bup & the rest of us

Epilepsy Global Awareness - Purple Day

Tomorrow is Purple Day to increase awareness about Epilepsy.

So break out your purple clothes and spread the word. Epilepsy exists, people need help and those with Epilepsy are normal & wonderful & need to be heard.

If you are in town, come on down to City Hall where the mayor will be speaking as well as a young girl afflicted by Epilepsy and free purple cupcakes for all.

Then scoot on down 7th ave to Banker's Hall where EAC volunteers will be handing out information, pins and cookies with purple icing.

If you're lucky, you may even catch a glimpse of me and my boys! I'll be the mom with the sparkly purple nails and two little boys covered in purple icing. See you there!

Epilepsy Global Awareness - Purple Day

Tomorrow is Purple Day to increase awareness about Epilepsy.

So break out your purple clothes and spread the word. Epilepsy exists, people need help and those with Epilepsy are normal & wonderful & need to be heard.

If you are in town, come on down to City Hall where the mayor will be speaking as well as a young girl afflicted by Epilepsy and free purple cupcakes for all.

Then scoot on down 7th ave to Banker's Hall where EAC volunteers will be handing out information, pins and cookies with purple icing.

If you're lucky, you may even catch a glimpse of me and my boys! I'll be the mom with the sparkly purple nails and two little boys covered in purple icing. See you there!