Winter Peace

The World Juniors' Hockey game is heard from the living room, there's an amazing cup of coffee by my side, and the boys are quietly tidying their rooms in order to put away their Christmas gifts. Peace of My Earth, that's what today is.

What are you doing this 29 day of December?

Snowman crafted by me & photographed by the talented Mrs. Smitten

Epilepsy and Tumors

It's November. For most of Canada, that means "MoVember" mustache wearing men to raise awareness for Prostate Cancer.

For me, it means SNovember...because Winter really starts here now.

More importantly, it's Epilepsy Awareness Month which hits home as we have a Seizure Warrior in our midst. Rhett. His Epilepsy is due to TSC, Tuberous Sclerosis Complex.

Today as we drove into the city, out of the blue Rhett asks. "Mom, why did my seizures start?"
We've been very open about this so it was a bit of a surprise to hear this question coming forward from the back seat. So I explained again, about TSC and tubers/tumors.  It startled me a little to be explaining so to Rhett, as he's older and understanding more all the time. Will this increase his anxiety?

"I know I have tumors in my heart, but I didn't know about my brain."
We've always talked openly. He doesn't remember. Memory loss. Just being a kid? Seizure related? Med related? Tuber related? All, Of. The. Above.

So, we ran through the list: Brain, Face, Eye. Heart. Kidneys. But the Eye, Heart and Kidneys aren't causing any problems! Yayy!

"So you're just going to leave them there?"

Yes, Buddy, we are. That's a hard concept to grasp for adults let alone an eight year old.

It was an interesting conversation. Interesting in that the topic even came up. Why then? Interesting to hear Rhett's queries, where, when and not really why. Just where and when.

Some conversations just shouldn't be necessary with a child. However, this is our story. Rhett's story. Not all of it, but definitely a main theme.

So, here's to the Purple Epilepsy Warriors, who wonder where and when their story began too.

Tornado Warning

This morning I kept pointing out to the boys the wicked clouds rolling through the sky. Little did  I imagine that a tornado was producing and we would be under a warning. Crazy! Especially in these mountain foothills. Who has ever hear of a tornado warning here?!

Something Wicked This Way Comes! Taken at noon in Bragg Creek.

Shot from the traffic circle at Hwy 8 & 22.

McKenzie Towne hail.

Thank fully a dear friend saw the sky and called to advise of funnel clouds over our area and before I could hang up from her Brad was texting to tell of the warnings coming over the radio.

An hour or so in the basement, and all is well. I'm sure the scare didn't help Rhett's Worry Warrior mindset. He had all sorts of scenarios and ideas to share. "Where will we live if our house gets blown away? I want a new house with secret passages in it!"

I am just grateful that All is Well. No hail. Very little rain and no touchdown. Amen!

Worry Warrior

Our Rhett is the Worry Warrior of the family. I'ts part and parcel with TSC. Brain chemisty. He can't help it....but we do work with it.

Yesterday was a beautiful example of success in facing those worries head on! Rhett joined his Camp in the Creek cohorts for a fun day of swimming at the wave pool. This is a BIG deal.

1. He's Eight!
2. Worrier.
3. Alone.
4. Riding the bus.
5. Changing without mom to help and finding a private stall on his own.

When the big yellow bus drove arrived at the hall, we were waiting. I saw my little man in his red rain coat sitting alone in the front seat of the bus. **sigh** I wish he had a buddy with him, but he went right?! 

Of course, Rhett proceded to tell me all the negative facts of the day. That he cried every time "I thought of my mother." and that it wasn't much fun at all. But then a Counsellor joined us and shared that she thought he had fun with two other boys and jumped the waves which his dad taught him to do. Plus, Rhett admitted he went down the slide six times, went in the big hot tub and even the steam room. So it was a success! 

I'm so proud of my Worry Warrior for facing the fears head on. For going. For participating. For admitting, albeit grudgingly, that there were fun moments amidst the worries.  

I love this boy and wish his worries away, in the mean time, I am so so proud!!

The following article, found via Pinterest, is helpful to understand and assist kiddos with anxiety. 

As Warner Sees It...Market Version

Saturday Morning at the Millarville Farmer's Market, as seen through the eye of a 9yr old boy. None of his photos are edited. I love seeing the market through his mind's eye. 

As I See It....Nature Version

Wild Horses...get itchy too

Wild Mare

Why I hate logging

Deer Miss

Kill Deer

In my garden

"Our" Doe...every afternoon she's here enjoying the shade

Fat Girl

This week I listened to the audio version of "Fat Girl Walking" by Brittany Gibbons.

(Hello Audible! I adore Audible!)

So. This was my first introduction to Miss Brittany. How have I not known about her?!?!
 Stuck under a rock in the woods? Probably. I'm a little sheltered.

I quite loved it.  It's a bit vulgar and crude humored at times, but its raw and honest and there are super nuggets of wisdom and insight that caused me to laugh out loud in public and  talk to myself like a crazy person.  As a fellow Fat Girl, I recommend reading this gem.

Several chapters I re listened too....and will again.

My greatest take away for today?

 1)Take care of me. Invest in me now. When I'm a size...whatever....not later. It's not my skin and size that makes me miserable, sad, lonely, check out, hide out, wear leggings too often and other ill fitting clothes....its me, my mind, my heart and the way others judge or how I FEEL judged all. the. time.

2) Affirmations work. I've known this for yeeeears but again knowing and doing are two different things. Yes, it feels ridiculous to say kind words aloud about myself, but writing them out is effective too. And..... Hello, it works!

3) Fake it until you make it.

I'm working on 1 & 3 today. How? The little things. I'm dressed....in a skirt and tall gorgeous shoes with a necklace and a bit of make up. My hair is washed. Hot damn!!These may seem trivial, common sense nothings to some, but when a person has given these rights up over time, well they are amazing when put in practice again.

Fake it Lady, Fake it!

http://brittanyherself.com/fat-girl-walking/

I Used To....

I used to blog...write...dabble in photography and share it all here. I've missed you Readers! I've missed you Blog! I've missed the release, the self inquiry that comes with writing.

So here I am, putting "I Used To...." behind me.

Everolimus/Afinitor Trial.....the Verdict

After much research, discussion and heartache we have decided NOT to enroll Rhett in the Clinical Trial.

Afinitor is a chemo drug. Has been used for years in the treatment of Oncology. Do I really want to risk Rhett's immunity? The suppressed immune system, the mouth sores, the slow healing, the risk of respiratory infection, etc etc are all side effects that I do not want Rhett to experience if he doesn't have to.

The next challenge is that Novartis does not provide any travel allowance for Rhett. This trial would require us to be in Vancouver weekly for 12 weeks. We live a province away. Logistically that is difficult. The effect this would have financially, time wise, and on our other child is huge.

Couple these two topics with the fact that it is a double blind study.....well, it wouldn't be beneficial to Rhett.

These decisions were very hard to come to terms with but now that we've made it, I am ok with our choice. Sometimes I just need to listen to my inner voice, or the Higher Power that is putting road blocks in my way. Yes with great effort I could work out the financial and travel concerns, but at what cost to my family. At what cost to Rhett? The fact that there were so many road blocks and concerns tells me that this Trial is not meant to be for Rhett. Sometimes, I need to just tune in and be grateful for what we have.

Having said all that, the TSC treatments Rhett is currently undergoing will remain as the status quo.

Uncertainty & Hope

Tuberous Sclerosis touches are lives even when Rhett is doing well.
We are awaiting a NeuroPsychology assessment. It'll be a long day for Rhett.
"A watched pot never boils" well, a watched email account never receives either.  I'm anxiously hoping an email from our neurologist will appear in regards to a Clinical Trial.

So many questions! So little patience!!!

Stay tuned....

Here I Am...

The children are downstairs quietly playing, dinner is in the oven, the "News" is on TV (I rarely watch as it is so negative. More politics? Ok. Less murder and mayhem.)

These days our life consists of homeschooling, living in the woods, solo parenting and working hundreds of kilometres away from home (Brad) and all that goes with these events.

Healthwise....the boys are doing well. All things considered. Due to the TSC, Rhett will always be under our watchful eye and consequently there are tests and results and therapies and delays and strategies and struggles. Life with "The Maybe Disease" as Brad and I call it.

Warner continues to shock and amaze us with his brilliance, interests, literal views, and struggles. There's always a struggle with any child however, Warner's have declined. Age? Therapy? Meds? Who knows. A combination of the three? Probably, whichever, I am grateful.

Life is a blessing and a trial. The trial area is in my head. I know that. However, it's still real. Loneliness, purpose and frustration are always close to the surface for me. So....the flavor of this blog will change as compared to before as the boys are older, stable, and I am in a different season, per say.

Follow along and comment, if you will.

Best wishes,
Margo

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