Wednesday, March 27, 2013

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. 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!

Tuesday, March 26, 2013

Epilepsy at our house....

is in full Purple mode today! 

Purple Brothers!
Rhett is our boy who defends himself from the Seizure Monsters everyday....the cutie with the glasses and crooked smile.

And me! Margo. With Luscious Lavender in my hair.

More to come tonight. Details. Pics. and Purple Boy love!

Have you seen how cute Danielle & Bristel are? Or Christy?

Sunday, March 24, 2013

Epilepsy at our house....
(in days gone by) looked like this little guy zonked in the back seat after the exhausting job of hooking up his first portable EEG.

 This appointment was our first time time in Emerg for seizures. That night the seizures escalated from 1 to 24 seizures in twelve hours. 

Our sweet little Bup. Just shy of a year old.  

This was such a scary time. Witnessing our baby seize and having no idea what, why, and the side effects. 

Cute as a button. Those blue eyes and sweet cheeks.

Go visit the other Purple Mommas please. They will have facts and hearts to share.

Saturday, March 23, 2013

Epilepsy in our house.....
is 30 heart stopping seconds that feels like a lifetime.

Read about Heather and Christy and Danielle. These Purple Mommas are a touching group of gals. Get a glimpse of cute Aidan's blue eyes, read a touching story about strangers becoming new friends, and help another little cutie earn a new van through votes. Go for it. I dare ya!

Friday, March 22, 2013

Epilepsy in our house.....looks like a "wiggly hand" seizure.

Rhett's right arm goes limp & he is unable to use it.  This is Rhett's "wiggly hand seizure" as he has deemed it.

When the meds weren't working, his whole right side would go limp, his head would fall to his chest, he would sound like he was snoring, would not be able to talk & they would knock him down.

Another fact of the day, you ask? Well, click on over here to see what Heather has to say.

Remember the lovely Purple Mommas on the side bar.  They have lots of interesting Purple tidbits to share too! 

Until tomorrow, Purple on my friends, Purple on!

Epilepsy in our house looks like taking two anti-seizure meds twice daily and wondering... why does our health insurance, Blue Cross, only cover one med?

Topamax. Which Rhett takes very little of, therefore it costs very little.

The Trileptal? He's at the top of the range based on his weight and it just barely keeps the seizure monsters at bay. We can NEVER be late with it or forget as the seizures will start within the morning.
Anyway....short story long, Trileptal is NOT covered.

And yes, we have it much, much better than our American friends when it comes to coverage and health care (just my opinion....) but it's still not perfect.

Would you like to learn more about Epilepsy? Click here.
Or look to the sidebar where all us Purple Mommas' blog links are.

Wednesday, March 20, 2013

It's a Purple Partay!

In an effort to rock the nation on  Purple Day, fellow bloggers: Heather, Christy, Danielle and I are joining up on Tuesday, March 26th. 

We will be sharing our stories, pictures, and our Purple hearts.  

As Purple is the color of Epilepsy, won't you join us on this Purple Day as we share all things purple and all things Epilepsy. It is our hope to increase awareness, break down barriers, share our hearts, our stories, our hopes and yes, there may even be a little bit of sadness.

As you know, Rhett lives with Epilepsy. He is fortunate right now to being doing very well. The twice daily meds are keeping the Seizure Monsters at bay....barely...but still at bay. Knowing Rhett, you know the journey he has travelled in his 5yrs. We are very grateful that Rhett's seizures are under control, but that was not always the case and is not reality for others, many others. 

Did you know that 1/3 of people with Epilepsy live with uncontrolled seizures? Are you aware that many people do not know what to do if a person seizes? Or the different types of seizures... what they look like? If you are local to southern Alberta, please visit the Be Like Jelly link on my blog.  There is much education to do!

 So please, for Rhett and all our Epilepsy Journey Friends, stand tall and recognize Purple Day with us.

1. Join me, HeatherChristy,and Danielle as we host a blog link up on Tuesday. Share your Epilepsy story, picture of your child, message of support to families battling Epilepsy and come post it on any of our four blogs on Tuesday. (The links will automatically be shared on all four blogs when you link to one) The more people who join this conversation, the more of a difference we make.

2. Share this post with others so they can join us.

3. Wear purple on Tuesday. Take a picture and email someone or put it on Facebook that we’re standing together. When you wear purple make sure you able to tell people why. I’ll be posting one Epilespy fact each day until Tuesday – I’d love for you to add yours in the comments.

Spread the word. Spread the PURPLE Love. 

Tuesday, March 19, 2013

It's Not Fair

The little boys and I were having dinner at our 1950's table when the conversation went like this.

Warner, to my left, says, "Mom, I don't have seizures, do I?"
M: No Warner, you don't.
W: See. I TOLD you!!!
He tried to tell me I have seizures too.
(Insert heartache here)
R: it's not fair! None of the other children have seizures. Just me!
M: I know Bup & you're right it's not fair.
R: Can you take the other seizure spots out of my brain & just leave the ones in my heart because they are sleeping?
M: No Sweetie we can't....
That's why your meds are so important because they keep those tricky seizures away.
R: Okay.
But It's not fair!

This dinner conversation still reverberates in my mind & heart.

A parent always wishes they could make "it" all better for their child. (Whatever "it" may be.) There's a sadness & sting when we can't. Especially when we realize how affected our child is by their illness....or disorder.....or pain. In Rhett's case it's seizures caused by TSC tumors, hence the ones sleeping in his heart, and I guess it's good that he becomes more aware & knowledgeable with age......but he is so right!

It's not fair.

Sunday, March 17, 2013

Purple Day

It's coming.
Are you ready?

Wednesday, March 13, 2013

Photocopy Fun

These boys never cease to amaze me. And just when I think they're old enough to be in a room without me....I find out different.

Tonight upon going to the basement, where our school room is, for my laptop, what do I find but a trail of evidence.
14 pictures on the floor.
 The printer is off the bookshelf and on a chair.
 There is a pair of ....ahem....little boy unders on the floor.
Did I mention the 14 pictures?

When will I ever learn?

1 of 14 copies.

Monday, March 4, 2013