Jamie Grace and Ruby Maye

I have to say this album is perking Ruby and us up a TON. 

Jamie Grace has come through alot in her life and has a fabulous album that Ruby listens to every chance she gets ūüôā

Jamie Grace is so awesome she posts stories about people that inspire her. ¬†I sent her Ruby’s story and she posted on her site!!!

http://imafighter.org/ruby-maye-a-little-fighter/

I just wanted to share that with you. ¬†Ruby still replaces the name “God” and Father with Mother Nature as this is how she sees things (makes me giggle in a really sweet way). ¬† ¬†When I showed her this page on Jamie’s Imafighter site she almost cried with pure and unabashed joy. ¬†Thanks Jamie. ¬†We love you. ¬†

By the way, that’s the pro-bowler in the background. ¬†The man referred to as “my wrestling buddy” by his grandson Holling. ¬†He’s my inspiration too. ¬†Thanks Dad. ¬†You’ve made two life time bowlers out of my kids. ¬†Right now we are bowling in the living room and singing “It’s a Beautiful Day” and thinking of Ruby’s last birthday at the bowling alley. ¬†

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Holey Moley, it’s almost been a MONTH!

Morning all, I’ve stolen some moments while Holling watches his favourite show Handy Manny. ¬†I think today he’s going to try hammering some real nails. ¬†He wants to build stuff. ¬†Sounds like his dad huh? ¬†Let’s just hope he doesn’t repeat his dad’s “nailgunthroughthehand” excitement just as I went into labour with Holling.¬†

Ruby is at school, she took a day off to get over a cold and then took a tumble in the driveway trying to run after her brother (in boots of course) and took a prize-winning head over heels dive. ¬†So, swollen knee, lots of ice and she’s back at school today. ¬†As it’s getting colder out with the snow creeping down the mountains, we’ve really noticed her sensitivity to cold is super¬†intense. ¬†Time for mama to get out her sewing kit and make some felted wool liners for Ruby’s¬†coat and mitts. ¬†I bit the bullet and blew a bunch of cash on some wellmade mukluks, they are the only thing that keep my feet warm up here. ¬†In direct contrast there’s Holling in his paper thin car pyjamas walking around the school yard refusing his coat and staying toasty warm while telling everyone that the legs go alllll the way down to here in his boots….pulling the bottom of the pants down inside his fireman boots…..while bending over……am I painting a clear enough picture? ¬† Not even cold hands. ¬†Gah. ¬†What a monkey. ¬†

He likes his mama-mornings and today it’s play-dough snake letters, obstacle course (gotta find my whistle) and nature walk. ¬†It’s definitely a 2 coffee day. ¬†

Ruby’s finally come around to wanting to answer Cassie at the Make-a-Wish foundation. ¬†It’s taken a while for her to be ok with identifying as someone who was sick. ¬†She refuses to believe she will be sick again and I am right there with her. ¬†Her wishes so far have been Fiji with Ursula for diving lessons and as of yesterday when we went over the letter to show her that wishes can be many things: trips, tools like video cameras, things that you get to keep…etc….so now it’s an Icelandic Pony. ¬†Surprisingly, her dad got behind this right away! ¬†I of course can’t refuse that idea. ¬†So let’s give her some more time to think about things and see what else she can come up with for wishes. ¬†

What I love about this kid is she keeps saying when we hand her the Friday Allowance (cough,cough, Dad, you missed this week)….she says “yaaaay! ¬†I am saving money to give to Laura and Tom!!!”. ¬†What a lovah! I can just smoooooch her up. ¬†I really CAN! ¬†What a joy!

Ya ya ya

I know. ¬†I am the girl who has about 25 diaries in a box under the house that I should just burn because each of them are about 3 pages long and then I forget to write in one again. ¬†I get writer’s block. ¬†Well now I have communication block. ¬†Full stop. ¬†I find I can have a conversation that lasts about 20 minutes – nothing intense mind you, just general whinging, – and then I’m out. ¬†I might as well be unconscious. ¬†So me not writing….don’t take it personally. ¬†I’m just completely brainless at the moment. ¬†Could have something to do with being hit in the head with a paint can but I’m just betting on stress.

So the first and most important thing on this list is the scan. ¬†It came back the same as the last which is clear of any tumor sites in Ruby’s brain or spine. ¬†Oh Joy! ¬†I didn’t realize that we were all sniping at each other (3. To make malicious, underhand remarks or attacks.) for a week before Ruby and I flew south for the scan. ¬†I’m sure you can imagine, I read many parent’s blogs about kids with illnesses …the lead up to a test is hardly bearable.¬†

By the way I was told this wasn’t at all that meaning, that it was in fact the bird that flew up and almost landed on Charlie today when we went fishing. ¬† Snipe or snipes¬†a. Any of various long-billed shore birds of the genus Gallinago or Capella, related to the woodcocks and¬†sandpipers, especially the common, widely distributed species G. gallinago or C. gallinago.

Clear clear clear of tumour sites. ¬†We are overjoyed and yet….it’s a calm thing. ¬†The funniest part of that day was when we went to our second home in Van with Alison and Darren, Ruby was more excited to tell them she had no cavities from her visit to her Edmonton dentist than the scan results. ¬†I think she knew it would be ok and so, it got her a couple new dolphin stuffies (we will be building a new house to house all these creatures). ¬† Hmm. ¬†I just thought of something funny. ¬†You can run through our house and always have a soft place to fall. ¬†That one is for Ursula who can come to our house any ole time and fall on the stuffies.¬†

Today we took the kids fishing. ¬†Most people think that’s for an hour. HA! ¬†Our kids are tough or at least only get bored until we catch fish. ¬†So we had them out on the boat from 12 – 8 today. ¬†YA! ¬†But, well there was a small tragedy. ¬†While Ruby received a new fishing rod to replace her new one that broke on the last trip (oops mom), Holling was given the Barbie rod by his big sister. ¬†It was a rite of passage for sure. ¬† So imagine if you will a very excited 4 year old. ¬†A very bored 8 year old. ¬†A mom who is only focused on fishing for a fish dinner and a dad who is trying to control a wild terrier and a motor. ¬†Throw into this mix the moment Holling loses his grip and the pink super-rod sinks to the bottom of the lake. ¬†Slowly and with an emphasis on immediate and rampant sobbing on the parts of both little ones. ¬†Holling sobbing “I’m so so so sorry Ruby, I feel horrible, I’m so so so very sorry”, Ruby sobbing “I will never see the Barbie rod again! ¬†Why didn’t you take pictures of it before Mom! ¬†We don’t even have a picture of it and I’ll never see it AGAIN, this is Horrible, I don’t want a new one I don’t want anythingIwanttogetoffthisboatandnevercometothislakeagainihatefishingIamsosoverysadIdon’twantanewonewhydoeseverythinghavetochange.”

Ah, there’s the crux of it, isn’t it. ¬†

Why does everything have to change.  

I say that as a statement because it was more a statement than a question.  We had a good long talk and we talked about growing up and riding horses, how that is a change and a good one, and how all things change all the time, seasons, time, weather, little brothers, big sisters, life in all forms.  

But she is saying how we all feel.  Why.  Why does everything have to change.  

And then just as we were winding up to catch a third jackfish, I dropped the fishing net into the water and down it went. ¬†Along with any further catches. ¬†There was no way we could reasonably boat a fish off a line with Charlie and two kids in a little inflatable. ¬†We packed it in and took a “go faster Daddy” boat ride back to the launch, loaded up our 20 lbs of rocks, driftwood and fish and atv’d down the road to the truck. ¬†We saw a “buffalorabbit” and possibly a “buffalosquirrel” but we weren’t convinced it had horns.¬†

Home we are.  Home.  With the mountains at our right side and the valley at our left, facing towards the sun that apparently never sets.  (I discovered tonight surfing what time Holling will get up) 

Aug. 05, 2014 Rise Set
Actual Time 5:56 AM PDT 10:34 PM PDT
Civil Twilight 4:55 AM PDT 11:33 PM PDT
Nautical Twilight 2:50 AM PDT 1:30 AM PDT
Astronomical Twilight Sun does not rise Sun does not rise

http://www.wunderground.com/weather-forecast/Yukon_Territory/Haines_Junction.html?

Wow huh. ¬†Sun does not rise, sun does not rise. ¬†And yet there it is, every day. ¬†Now THERE is a temporary constant that Ruby can hang on to. ¬†Ok, time for sleep, I’m addled and confused. ¬†Look at me. ¬†I’m saying it never sets but in reality it never rises. ¬†Cat in box, cat out of box. ¬†

Much love,

Ruby’s mom.¬†

The travelling, oh the travelling

I must give a huge shout out to Air North who keep helping us out in one way or another. ¬†If it’s allowing us that little extra bag or getting a wheelchair for Ruby when she’s feeling super tired out, they are on it and more. ¬†I love you Air North. ¬†As much as we can, we always travel with them. ¬†

Well, back from Edmonton, it’s here there and everywhere for us. ¬†We all have colds, sore throats and headaches. ¬†Ick. ¬†Icky sticky cold. ¬†Holling blows his nose on my shirt in the airport, Ruby is running around like crazy getting upset with us for telling her to slow down before she……whoops, wipes out again. ¬†I think the one big challenge for a kid with brain surgery and cancer like this is that it changes their perceptions of their abilities post treatment. ¬†Ruby is very very frustrated with constantly being told to slow down and be careful and watch out and slow downslowdownslowdownslowdown. ¬†I don’t blame her, if I was my own mom, I’d need earplugs. ¬†I’m very annoying. ¬†

We saw Dr. Trethart in Edmonton and had lots of testing down to assess her heavy metal load and other things. ¬†She was very brave and just did what was needed though every blood test etc comes with a load of instant terror and trauma. ¬†It’s challenging to not just pick her up and say “ok, no more bloodwork, this kid has been through enough!”. ¬†

The changes we’ve noticed with Ruby are probably more social than anything else. ¬†Imagine being locked up without kid interaction (except for your hilarious 4 year old brother) and then getting out in the world and being unsure of how to be 8. Both of my kids are good communicators though so we just keep working through it. ¬†I’m a bit “old lady” so I have to find my 8 year old too. ¬†Top of Holling’s list right now is to have friends. ¬†He makes friends wherever we go and then runs up to me to announce it. ¬†I think the focus of the summer is getting him hanging with some wee ones his age, ones that live here. ¬†Ruby is all about the older girls. ¬†She is banking on some serious Wendy and Brenna time. ¬† Her bookworminess has taken over again and I find her hiding in a variety of cosy reading nooks with an Ivy and Bean or some form of fairy book. ¬†I’m super happy that she’s able to read. ¬†That was the one thing she missed the most when her vision went nutty. ¬†¬†

Well, it’s off to make lentil soup and some buns. ¬†Kids are watching BubbleGuppies and taking dance party breaks to Primus. ¬†Yes. ¬†My kids love Primus. ¬†Maybe they will make an awesome rhythm section one day! ¬†Paypaya (better known to Primus fans as Duke Lion) is their fav and they zoom around the house in dresses and wigs. ¬†Heeeelarious. ¬†Ciao bellas and thanks for being patient. ¬†I had to get to a point where talking to anyone or writing stuff didn’t put me in an angry place. ¬†Processing this is a long long road. ¬†Just as Ruby’s journey is a long one. ¬†As much as “they” say her cancer will return placing her in palliative care as a 100% guaranteed situation, I have a sense that this isn’t true. ¬†But it lingers and eats holes in my hope. ¬†So building protection from negativity is tricky. ¬†Being the Indigo that I am, anger has been a great motivator in my life: dashing the expectations; striving beyond opinions; defending the undefended, that’s been my path. ¬†Now I need to be motivated by a sense of rightness not righteousness. ¬†Different fire, same heat. ¬†Yes. ¬†I’m pontificating pre-coffee. ¬†Maybe I’ll go catch up on that and then fold the endless laundry. ¬†Hugs to you all. ¬†Every wish, dream, prayer, positive thought sent into the universe, to your god, to whatever you believe in counts and shifts the energy that surrounds us. ¬†Thank you.¬†

To the tune of the Wizard of Oz theme song…

I forget sometimes how these are such long distances. 

When I plugged in to this site to see how long it was to HJ from Richmond it said 33 hours. So when Brian texted me to say he was in Pink Mountain I thought….where is that again? It mustn’t be too long to home now right? ¬†Hahahahaha (wild laughter at myself for my sheer lack of long distance driving education – my longest single run drive might have been 10 hours in my life). ¬†http://www.distancesfrom.com/ca/distance-from-Whitehorse-to-Pink-Mountain/DistanceHistory/5044698.aspx?IsHistory=1&GMapHistoryID=5044698 ¬† ¬†If you see a little blue car with a fox, bunny, owls, dancing mushroom, broccoli and fruit on the side loaded to the hilt, hopefully NOT sparking a trail with the bike carrier along the ground, give a wave and just check to¬†see if the driver is still awake.¬†

Wow, It’s a long way home. ¬†It really really is.¬†

I’m madly packing, cleaning, recycling and washing dishes. ¬†Tomorrow is vacuuming, floor washing, last wash for sheets etc and then whammo. ¬†On the plane. ¬†For us it’s mad luggage but once we are in the airport courtesy of the Christensen/McDonnell’s muscle, we should be left to watch the planes for a bit, argue against buying any more toys, sample the airport fare and get on the 2.something hour ride home. ¬†See you soon you beautiful Yukon you. ¬†I can’t say The Yukon Territory apparently so I will settle with MY Yukon. Or Yo Yukon, That Yukon, etc. ¬†I’m no grammar ninja. ¬†Obviously.¬†

You know, if this was Brian and he was with the kids, he would SOOOO splurge and buy them a little somethin somethin.  Right? Such a softie. 

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