It's Epi-member Folks!
That's right. Bust out your purple attire, put on your brain-face, and raise some Epilepsy Awareness.
Rhett's meds are keeping the Seizure Monsters at bay. Rarely a breakthrough seizure. Yes!
Always, the concern of those monsters stalking him are in the back of our mind. While on the forefront are the effects of those seizures. The delays, the struggles, etc that Rhett works to overcome everyday.
This is why awareness is so important. Overcoming, fitting in, achieving, and showing people that there are reasons making friends, playing with others, and following directions (to share a mere glimpse) are challenging.
Awareness was shown to me on a different level yesterday by a friend of my sister's. This lady is amazing. I would say her Epilepsy is severe. Her seizures are still uncontrolled and have affected her in many different ways, yet she is the most positive, inspiring, happy person. For example, physical mobility is becoming more limited yet she walked 5k....using a walker....this week. 5k people!!! Woot woot Ms. TO!
....and in other news, there is a bit of venting wanting to burst from my fingers.
Our sweet, "Sheldon-esque" Warner spent a "fun" afternoon at a new friend's. This 3 hr playdate included 3 hrs of playing Halo, and eating ice cream, cheese, crackers, meat and fruit punch.
Gahhh!!!! This is the where the ADHD monster steps in. Shall we liken it to Animal of the Muppets? How about Animal crossed with Sheldon from Big Bang Theory. That's bang on!
If there was a way to provide Warner with a one day effective detox, that would eliminate the extreme reactions those three hours have created, I'm in. If only......
Sunday, November 3, 2013
Wednesday, October 23, 2013
Alone Time
Oh the silence. Other than the sound of a book I am listening to on Audible. The children and my sweet husband are out for the evening to invest the boys into Beavers and Cubs.
I love, love, looooove being home alone. A little down time, a little silence, a little adult noise. Ahem, the dishwasher and the IPHONE. It's peaceful. The sky is dark and so is the house.
Our life here at RWB has revolved around the boys, our family's work'n'dad's home schedule, and just day to day life. The unexciting and definitely not mundane. We are homeschooling both boys, continuing with our work away & solo parenting schedule, friends, and lego lifestyle.
Recently, blogging has been inching back into the edges of my mind again. I have missed you and missed blogging. So here I am, writing, while listening to an audio book, in the dark and enjoying this small process of re-opening the blog.
Until next time.....
I love, love, looooove being home alone. A little down time, a little silence, a little adult noise. Ahem, the dishwasher and the IPHONE. It's peaceful. The sky is dark and so is the house.
Our life here at RWB has revolved around the boys, our family's work'n'dad's home schedule, and just day to day life. The unexciting and definitely not mundane. We are homeschooling both boys, continuing with our work away & solo parenting schedule, friends, and lego lifestyle.
Recently, blogging has been inching back into the edges of my mind again. I have missed you and missed blogging. So here I am, writing, while listening to an audio book, in the dark and enjoying this small process of re-opening the blog.
Until next time.....
Tuesday, July 23, 2013
Today's Motto
If they don't offer....don't ask.
It's summer time and the boys have been blessed to spend this week's mornings at Lego Camp.
They are living it!
As of yesterday, and of course that opinion is subject to change....without notice.
Today's motto stems from morning drop off as I ASKED the instructor ( whom we have had on diff occasions) how it went yesterday.
Reply:
(Pause)
"OK. "
(pause)
"There were some tense moments."
*sinking...sinking* Ugh.
Well.
He didn't offer up any further info & I'm not asking (yet) as Warner and Rhett are happy, and all looked well at the end of end of the day yesterday......so I'm not asking. ;)
Tuesday, May 28, 2013
TSC Interview
On International TSC Day, May 15th, I had the honor of interviewing two individuals who are touched by TSC, heart and soul.
I loved it! The whole interview and could have talked for much longer than 10 minutes.
Hopefully, the audio will be available soon so that I can share with you.
Until then, TSC month is coming to a close. Yes, May is wrapping up. So I shall leave you with this fact:
I loved it! The whole interview and could have talked for much longer than 10 minutes.
Hopefully, the audio will be available soon so that I can share with you.
Until then, TSC month is coming to a close. Yes, May is wrapping up. So I shall leave you with this fact:
Also, a picture of this TSC Cutie, our Rhett, who happens to be 6yrs now. Six years spent dealing with the ups & downs of Tuberous Sclerosis.
Wednesday, May 15, 2013
Be a Hero
All our Blue Day for TSC plans have been shelved as the boys and I are ill with a virus.
So a little shout out to our HERO friends who wore blue today for Rhett, took the time to teach their kiddos how to pronounce Tuberous Sclerosis and are doing their part to increase awareness.
xoxo
So a little shout out to our HERO friends who wore blue today for Rhett, took the time to teach their kiddos how to pronounce Tuberous Sclerosis and are doing their part to increase awareness.
xoxo
Friday, May 10, 2013
Tuberous Sclerosis Blue
The blog has been a bit quiet...but that's about to change...and it's not that TS has been forgotten. Goodness no!How could I forget my luvbug Rhett and "The Maybe Disease" he lives with.
However, I've been posting TS facts on my facebook page, trying that avenue for a change.
Here I return. Home. The blog feels like "home" and I like that.
So....have you done anything to accentuate your TSC Blue?
Read a little? The TS Alliance...our American friends...have heaps of TS info.
Pinned a little? Pinterest is a wealth of information on many levels...including TS. Woot! Woot!
Lit your home? Your city? Shout out to Calgary and Toronto for turning on a blue light or two. The Langevine bridge and CN Tower are going blue on the 15th.
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| TSC Blue Langevine Bridge in Calgary. |
Medicine Hat...I shout out to you too. The mayor has declared May 15th as Global TSC Day in Medicine Hat. Woot! Woot!
It's all these "little things", that increase awareness and get people talking. Talking works. Talking means people are sharing...people are learning...and people take notice. That's all it takes. One big chat for a giant step forward.
By the way, stay tuned here....for an exciting Tuberous Sclerosis Surprise on Monday!
PS: I am SO excited! Click here for one little hint.
Wednesday, May 1, 2013
Blue
Blue is the "signature color" ( read that with a southern accent) of Tuberous Sclerosis.
The Maybe Disease that our Bup lives with.
And May TSC month.
And blue is the Color of Rhett's beautiful eyes....of which one has a tumor close to the centre of the retina, thanks to TSC.....but they are a beautiful blue, filled with mischief and love.
The Maybe Disease that our Bup lives with.
And May TSC month.
And blue is the Color of Rhett's beautiful eyes....of which one has a tumor close to the centre of the retina, thanks to TSC.....but they are a beautiful blue, filled with mischief and love.
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