Friday, December 30, 2016

The Closing of Christmas

Another Christmas season has come to an end.

The month of December was quieter than usual, in some ways, and jam packed from the 21st on.


We were blessed to ride the Polar Express. It was magical, even to our older children and adults. The Alberta Prairie Railway puts together a Christmas experience worth attending, especially if your children are under 10yrs.  We loved the whole experience! The staff dancing to Hot Chocolate and serving up delicious chocolatey beverage in mugs that are gifted to us. Followed by a gooey, chocolate chip cookie, the reading of the story The Polar Express and then arriving in the North Pole to see Santa and his Elves waiting for the train. Hearing the children yell "Back it up! Back it up! " to encourage the engineer to reverse and pick up the jolly old elf himself, gave me goosebumps.



It truly was a sweet experience and one that our boys will remember forever.

Spending time with those you love, family or friends is an important aspect of Christmas. This year we traveled to my brother's and were blessed to stay with them for two nights, celebrating Christmas with a multitude of family members. Even though it has been years since seeing my SIL's family they opened their hearts to the boys. We all felt special and included. That is how we should all feel on Christmas Day.




Our 5 hour road trip home included two stops to visit with special cousins and friends. It was a long, long day yet worth the effort to spend time with friends & family. Afterward there was still a 3 hr drive facing us in the midst of a gale force Chinook. The weather change by 20 degrees and the winds wreaked havoc on the roads. Thankfully, Brad was driving, the boys were sleeping and we made it home safe and sound.


As we wind down from Christmas, and contemplate taking the decorations down I find that the New Year is on my mind. Resolutions? No. The need to reorganize and refocus? Yes. First, lets start with the home cause it is a Christmas disaster!



Tuesday, December 6, 2016

The Legend of St. Nicholas continues....

Warner's first homeschool Christmas we studied St. Nicholas. He resonated with the legend. Loved the idea of a man riding through the streets and secretly giving gold to help others. So, we adopted a very simple recognition of St. Nicholas Day.



Now, he and Rhett both look forward to St. Nicholas Day. It's "trailer for Christmas, like a preview" according to Warner.



Although one.more.thing. to organize and prepare for at Christmas is the LAST thing I want, St. Nicholas Day is fun. Advent kicks off the season and St. Nicholas Day just keeps it going.

The shoes are set out, the tiny gifts are placed along with chocolate gold coins. Breakfast is slowly baking in the crockpot. This year it's an easy Bumbleberry Crisp. The table is set with festive Santa plates and even a Santa and Rudolph snow globe. We are ready!



If only the rest of Christmas was this simple?!

Happy St. Nicholas Day to you!


Wednesday, November 2, 2016

How It All Began

Our Rhett was a perfectly healthy, aDORable, meeting all his milestones baby....so when the seizures began at eight months we were stunned.....and entertaining denial.  There couldn't be something wrong with our sweet baby. Every parent's fear.



How did the seizures begin? What did they look like?

Baby Rhett, "Bup" as Warner named him, had just woke from a nap. As I went to pick him up, his head was handing to the right and down and he didn't respond when I spoke to him. That was the beginning.


After two more of these episodes over the next two weeks, I knew something was very wrong. I was scared to even tell anyone. Can you imagine that? Witnessing something that is just not right with your babe, but being scared to voice these fears as then they are REAL. Was I simply a new (ish) mom over reacting? Was I exaggerating what I was seeing?

It wasn't until a month later, that anyone else witnessed these episodes other than me. First my mom. We were folding laundry together and Rhett was standing, holding onto the laundry basket. He wasn't walking or fully standing on his own yet. Suddenly his head dropped, his right hand let go of the basket and he wouldn't respond to my mom's voice.

 "Rhett. Rhett. Margo, what's he doing?" said my mom with alarm in her voice. For the record, my mom basically never shows alarm. Seriously. Rarely ever. So just the fact that she saw what I saw and that it scared her terrified me. Even all these years later, as I write this, my eyes tear because hind sight is 100%, and my mom's concern reiterates how obvious and scary those seizures were.


That was the beginning.

Soon, my husband witnessed a seizure.

Now my fears are shared and we act. An appointment is made with our family doctor. Of course, it takes two weeks to see her. In the mean time, the "episodes" are increasing in frequency. They have escalated from once every two weeks, to weekly, to hourly. The evening of the hourly incident we are dining at a friends. They see our baby drop his head onto my shoulder, his right arm stiffen, and the inability to respond when we talk to him. It is hard to share this with others. It is scary. Sad. Unknown. That night we forget about our upcoming doctor's appointment and head to the emergency department at our local Children's Hospital in stead. This is too much. This cannot wait another day let alone week.

Rhett and I spend hours there. Undergoing questions and questions and questions. Finally a psych staff member witnesses a seizure too and sees this is not in my head, he is not seeking attention (seriously, I was asked that), this is not about my marriage or finances or abuse, this is a beautiful baby boy having seizures.



I clearly remember driving home early the next morning, with a sleeping Rhett in his car seat, all bundled up in an ambulatory EEG, talking on the phone to my dear friend MJ, teary that our sweet Rhett has Epilepsy and we don't know why.


This is the beginning of Rhett's seizure story.

Tuesday, November 1, 2016

November Epilepsy Awareness Month

November is Epilepsy Awareness month. 


This year I will be posting and blogging Rhett's story. Although Rhett's seizures are quite controlled through meds and a past neurosurgery, it's important to share what he has been through, how far he has come and how the seizures affect him even though they are not visible to your eye. An observer may not notice Rhett's seizures and they are not of the "grand mal" (old term)...generalized tonic clonic type, yet they are still important, they still cause changes and damage. My decision to share is a reminder to everyone including myself how amazing Rhett is and that Epilepsy affects people, always. We all can handle a little more compassion and awareness towards our friends living with seizures. 


So, join us for a month of celebration (yes, we have much to celebrate!), education and remembering all we've been through.
xxx

Friday, September 30, 2016

Forest Walk




Walking in the cool fall sunshine, we  explored our local forest to identify and recognize the trees that live in our area. It was so lovely to walk and pay attention to our surroundings, to be.




Of course, nature isn't everyone's interest and there were moments of me reaffirming to one of our scholars that we were there to to LEARN and OBSERVE and it's much more interesting if you PARTICIPATE. Ack! Even though this is the ideal way to learn it doesn't mean it's always easy, especially when one isn't interested in trees. Oy!



However, we all enjoyed being outside, with our friends and even learned new information and spike our interests in the difference between Spruce, Pine and Fir trees. And that is the most important part of learning isn't? Interest. Desire. Questions.



An afternoon well spent, an education well met.


Forest Walk




Walking in the cool fall sunshine, we  explored our local forest to identify and recognize the trees that live in our area. It was so lovely to walk and pay attention to our surroundings, to be.




Of course, nature isn't everyone's interest and there were moments of me reaffirming to one of our scholars that we were there to to LEARN and OBSERVE and it's much more interesting if you PARTICIPATE. Ack! Even though this is the ideal way to learn it doesn't mean it's always easy, especially when one isn't interested in trees. Oy!



However, we all enjoyed being outside, with our friends and even learned new information and spike our interests in the difference between Spruce, Pine and Fir trees. And that is the most important part of learning isn't? Interest. Desire. Questions.



An afternoon well spent, an education well met.


Sunday, September 11, 2016

Love

I love this trio.
And that is all.

Monday, September 5, 2016

Hello Fall!

Fall is more of a "New Year" than Jan. Falling leaves, cool evenings, new beginnings in schoolwork, and activities. Truthfully Fall is my favourite.

Today a little Autumnal Decor was added to our home such as this table centre piece. Natural and neutral. Found wasp hives, found deer antlers, Indian corn and a squash in a cedar window box place on my grandma's wool blanket. Everything was shopped from the home or barn. I love that nothing was purchased new!

I have plans for pale blue pumpkins but had a spray paint fail today.  Round two on another day.

Thursday, March 17, 2016

BodyTalk

A new adventure.
Recently I took the fundamentals course in BodyTalk. My goal is to offer treatments from our home. The sunroom is the perfect room for it!
BodyTalk is a gentle modality used to free blockages in our bodies. It's really quite profound how such a gentle approach can have some amazing results.

One client wrote to me "You have a gift girl! Last night I slept with out sleep aids which I haven't done in forever and my mind is so much clearer this week. Thank you !!"

How wonderful!

I'll share more about BodyTalk in future posts, until then if you want to learn more click on the IBA Link, International BodyTalk Association.




Advocating

It never ends. Advocating for your children.
Pushing, teaching, explaining.
It's frustrating yet necessary.


The boys are in homeschool classes at our homeschool board. Both have one to one support in class with a mentor. We are so blessed. While they learn, I am writing.

While I write to a contact at the Ministry of Education to explain once again why Rhett is eligible for severe disabilities funding. The constant push-pull of advocating.  Be strong, be clear, be factual. When really I want to send a picture of Rhett's MRI, circle the black holes where there used to be a temporal lobe & hypocampus and write, " Nope, didn't grow back!! Still needs help!" 😋

Somehow that direct approach may not be welcome.

The Wheels On The Bus started playing in my head as the most recent email was typed. A fitting theme song for special needs advocacy and all parents!


Saturday, January 23, 2016

Date Night, 10yr old Style

Acquarium at Bass Pro Sports - image from Bass Pro
Warner and I had a much anticipate date night last night.  We had been looking forward to it all week, especially Warner.
Ever wonder the way to a ten year old boy's heart? Well, here's how you can win my Warner's.
First take him to Bass Pro Sports to play "the shooting game". 50 cents for a round of (laser) shots at targets that make taxidermied animals move.
"the shooting game" image from Bass Pro

Next we were off to Murdawg to purchase a much sought after Five Nights at Freddy's tshirt and Minecraft trading cards for his little brother.
After dining on a 5 dollar fill up at KFC it was across the mall to Cinescape for a few more video games.

I tell you my heart was racing, palpitating after the Jurassic Park game and I seriously had my inside voice telling me about getting healthy so as to survive video loving boys!!!

All of these activities go against my heart but they are what he loves and it was a rare date. I hate video games. I hate taxidermy and dead animals and hunting. I hate guns. Sadly, I love KFC!! BUT Warner had the best time and was so thrilled that I did played games with him, which I almost never do.  So what's a good mom to do?!

video


Courage

Rhett has shown incredible courage this past week. What has gotten into him?!
Five situations that normally would have caused anxiety yet he has shown courage and confidence.
1) Dentist - alone. No momma by his side. His idea!!!
2) Neuro - measured and weighed by the RN without momma by his side!!!
3) Gift shop- independently went to the desk to pose a query...without encouragement or my help!
4) Road the zip line from the tall base for the first time. On. His. Own.

These are HUGE steps for your Worry Warrior. I am so proud and surprised!

When asked what has changed for him, he said," My heart".




Oh, how I love this boy.

Thursday, January 21, 2016

Neuro Update

Our bow-tied Neurologist called us in for a follow up as he had a last minute cancellation. Woot! How wonderful!

Really, it was just a nice to see you visit as we have "no" Neuro concerns with Rhett right now. Nothing imminent. Nothing new. Status quo.

We did learn that our Opthamologist has retired! She is lov-e-ly and will be missed.

Med coverage is on my top priority list and hopefully Dr. Bow Tie will have some secret knowledge up his sleeve to help us since we have no coverage and are in no way interested in changing Rhett's meds.

Rhett was a Neuro rock star today. Happy! Chatty! Aaaaand even went with the nurse for weighing and measuring sans maman!!! This is a first! He is becoming so brave. I love it! **sniff, sniff** No, really, I do. Even Dr. B noticed his happiness and willingness to be assessed.



So based on all that, Rhett isn't required to visit Neuro again for TWO YEARS. T-W-O Y-E-A-R-S!!! This is amazing to me...and a little sad for Rhett. He wanted to stay longer and play in the children's area "since I won't be back for two years. I like it here Mom." Which is bittersweet to me. I'm glad he feels so comfortable at Children's. It's been a big part of our lives for 8 years. So for Rhett to hear that he won't return for 2 years is a little odd...off putting. Sweet boy.

Blessed boy.

"You are a blessing Rhett."
"How Mom?"
"I am blessed to have you in my life. My life is better because you are in it." I explained as I hugged & cradled him like a toddler, not the gigantic 8yr old he is.
"Mom, is Warner a blessing too?"
LOL Oh Rhett!!