Monday, August 31, 2015

Tales from the Vault - World CP Challenge

Tales from the Vault is a feature where I bring back some of my favourite posts from the archived blog. All text from the original posts has been left completely unedited; however, where I think context is required it's been added.



This one's brought back from October 2012. Why would I be brining this post back? I'll give you a hint: you'll be hearing a lot more about this over the coming 4 weeks :) By the way - read right to the end for two of the cutest boys ever!

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The World CP Challenge is over and for our team, was a complete success.

We took 1,418,536 steps.

We raised $7427 dollars. SEVEN THOUSAND DOLLARS! To think I was scared to make our initial goal of $2000. Unbelievable.

We finished 1st in Canada for fundraising.

We finished 2nd in the world in our division of 1082 teams and 4th of 2002 teams over all.

Most importantly - we spread CP awareness every day.

Will this money we raised ever directly affect Asher and Nolan? I can't say for sure, but that's not the point. If it can help someone else living with CP, or can aid in research that will help make CP more preventable, then in my opinion, our fundraising will have been a success.

Because this was not about raising money for Asher and Nolan specifically, nor was it about finding a cure for CP. Do I think CP can actually be "cured"? Well I'm not sure. The answer to that lies far outside of CP specifically, and under the general question of "can brain injuries be reversed?". One day, I hope so.

But I do think that more imminently prenatal and neonatal care will improve more than it already has. To compare neonatology 50 years ago to now, it is staggering how many advances have been made. Not long ago, babies born as young as Asher and Nolan were considered a miscarriage, and now more times than not those babies go on to lead thriving lives. So if medicine has advanced that much in caring for tiny babies, I have no doubt that it will keep advancing to a place where they can prevent many of the brain injuries that happen to babies either in utero or shortly after birth. If some of the money we raised goes into that, I will be thrilled.

The greatest part of this challenge, for me, has been how much I have been talking about CP, and hopefully, how much each of you who have supported us have been learning about it too. I don't want people to judge my boys, or pity them. I just want them to be given a fair chance at all of the opportunities the rest of us have. I don't think that's too much to ask.

So now, some thank yous. Firstly and most importantly Auntie Di and Leanne. Without your steps and your fundraising, we couldn't have done this. Thank you for loving our kids as much as you do, walking every day, and hounding your friends and family for money. Awkward, I know, especially when they're not your own kids. We appreciate it immensely.

And then to you who donated, all I can say is WOW. Often times it wasn't just the donation, it was the note that went along with it, or the private message you sent offering your support. Many of you had me in tears. We can one day explain to Asher and Nolan how much everyone cares about them and acknowledges and embraces their differences. You opened your wallets, yes, but that money may as well have been deposited straight into my heart for the value of friendship and support that it showed our family. We will remember this, and you, always.

I wish I could put your names up in lights, but this measly little blog will have to do. I keep reading the list over and over, so happy as each name registers. Seeing the diversity of all the people on this list and how we are connected to all of them has been absolutely heart warming. From childhood friends we haven't seen in years, to friends' parents we've never met, and everything in between. Jordan, the little heart breaker, even got a donation from an ex-girlfriend on another continent! 120 of you gave us $7427 dollars and that is totally unbelievable to me. So without further ado - thank you, thank you, a thousand thank yous, to:

Aaron
Aaron
Adele
Albert and Betty
Albert and Connie
Andy and Pat
Anna
Annette
Annie
Bernice and Bill
Bevie
Brandon and Mikale
Brian
Bridget
Candice
Carrie
Cathy
Chelan
Chelsea
Chris
Chris, Becky, Gabey and Olivia
Christa, Adam, Alexis and Madison
Cindy
Cindy
Clare
Connie
Connie
Connie
Dana
David and Shellene
Dawn
Denise, Ryan, Hanna, Olivia and Luke
Donna
Donna and Rowan
Dre
Drew
Ed
Erika
Frieda, Ryan, Chris and Ben
Gail
Gail
Garett, Maralise and Calla
George and Jackie
Georgie
Hazel
Jacqui
Jamie, Cameron and Elliot
Jane
Janet
Janice
Jason and Yuli
Jeff and Renee
Jen, Jon, Kadence, Maximus and Rianna
Jenn, Raymond, Blake and Joe
Jessica
Joe
Johnny and Jake
Judy
Kaiti and Gio
Kari
Karina
Kate
Kelly
Kepmen
Kirsten
Kirsten, Danny and Evie
Lacey
Laura and Jason
Laurie
Laurie and Paul
Lisa
Lisa
Loretta and Steve
Lori
Lynn and James
Maggie
Marilynne
Martine
Meghan
Melanie
Michael
Michael and Trisha
Michelle and Rick
Michelle, Jon, Jenna and Ella
Mike and Dawn
Natel, Darren and Madden
Nicola
Nicola
Nicole
Pam and Darrin
Pam and Regan
Patti
Paula, Daryl, Gavin, Jordan and Kayla
Peter, Shana and Jeremy
Piet, Ale, Lua and Gaia
Rachel, Jason, Dane and Arden
Rebecca
Richard
Richie
Sacha and Jon
Scott, Ann, Lee and Owen
Scott, Mary, Cassia and James
Sharon
Shasta
Stacey
Steph and Elise
Steve, Jen, Chase and Arden
Summer, Tammy and Don
Tammy
Taryn
Tim and Barbara
Tim, Krista, Kaitlin and Connor
Tom
Tracey and Kevin
Tracie and Kevin
Tracy
Tracy and Mike
Tracy, Eric, Toscane and Emeric
Travelodge Duncan
Wayne and Linda
Wendy

Now, I can't leave out the stars of the show. Asher and Nolan have something they want to [apparently very quietly] say to you:


Cheeeeeeeese. Also, THANK YOU EVERYBODY!

Friday, August 28, 2015

All Good Things Must Come to an End

We just got back from 5 glorious days in Portland. Doing a little bit of hospital-ing, a little bit of sight seeing, a little bit of shopping, and a whole lot of eating. Oh, the eating.

The purpose of our trip, as always, was a visit to Shriner's hospital for our yearly check in. In the past, we've had consults with an orthopedic surgeon, a neurologist, a PT, an OT, and orthotics. We've talked about things like hips, and gait, and AFOs, and drugs, and surgery, and and and. Everything we've had questions or concerns about, they've offered assurances or advice - never faltering from the advice given to us at home but still nice to have their expert opinions.

This year, however, it was decided that our time at Shriners has run its course - more so a decision made by them than by us, but we can't argue with them. The long and short of it is the boys are doing amazingly well. They are getting excellent care in Canada from doctors that our Shriner's docs know we like and trust. They are doing as well as can be expected for both of their severity of CP, and Shriner's doesn't feel like at this point they have any more they can offer us. Given the expense of hospital care and travel it's not something any of us can justify any more. Bittersweet, really. Happy - because the boys are doing so well they don't need the "expert opinion" anymore. Sad - because mom and dad love the assurances that "expert opinion" gives us.

But, we know we are in good hands in Victoria. Did we not feel that way, we would have expressed that to our Shriner's team and they would have continued seeing us, I have no doubt. So we say goodbye to the Shriner's chapter of the boys' lives. They made it clear we are welcome back at any time should things change, but we need to be hopeful that will never be required if the boys continue along the strong and healthy path they seem to be headed.

On a travel note, that means we will no longer be heading to Portland every year. No, no, let me take that back. We will no longer be heading to Portland with children every year. Just the adults however - that culinary adventure planning is already in the works. We love that city and are sure that with and without kids, it won't be long before we return.

In the interim, we had an amazing trip full of memories, as always. Here's a few photos to tell the story of the trip...for a larger album click here.













Monday, August 17, 2015

Date Days

The summer is flying by and although we've had a bunch of fun just letting the days pass by, we decided we should make as many quality moments as we could. We've gone on one on one dates with the kids in the past, but not frequently. So we decided this summer, we would officially do it. Each child gets a one on one date to whatever location or whichever activity they choose. The world was their oyster!

Too bad (or good, depending on how you look at it?) that oyster didn't turn out to be very big, so the adorably cute and simple selections by each child were as follows:

Rio + mom = downtown on the bus
Rio + dad = a bike ride and a slurpee

Nolan + mom = ice cream
Nolan + dad = a trip to the park

Asher + mom = a "fancy" restaurant
Asher + dad = China town

We started the dates three weeks ago and did two dates per weekend. Rio and I started with a bus ride (although disappointingly because it was the weekend, not a double decker), a shopping spree at Chapters with some birthday money, followed by another bus stop to a delicious bakery and then a final leg of the busride home. Who knew the #14 could bring such joy. The pinnacle was at the end when she got to pull the cord (of course it was, who doesn't love that?!).


Asher and I went next and although it was our turn, he wasn't feeling up to himself so instead of going to a restaurant he decided on a milkshake. I took him to a soda shop downtown where he got his prized chocolate shake, and I got a Dr. Pepper float. When's the last time I had a float? I'm thinking 1995.


Nolan and I rounded it out this weekend with a trip for ice cream - or unbeknownst to him actually frozen yogurt because they have the best toppings. Absolutely delish. Nolan told me he only ever wants to go for a date with me there from now on. I let him go to town on whatever toppings he wanted, and although he chose every sauce available, and a few different cookie crumbs, he picked exactly one piece of candy. ONE!



In between all of those, the kids had their dates with their dad too, but that's boring. This is about me.

It was so nice to have some quality time with the kids. Rio and I spend time alone together on occasion, but really we're still generally doing errands or traveling to and from sports or activities. Likewise, I spend a fair bit of time with the boys without Rio - but as for each boy alone, that is incredibly rare. We have such genuinely sweet, funny, smart kids it is so nice to take them away from the things that infuriate them and make them act up (their siblings if you didn't catch that) and have some calm conversation and share some non-toilet-humour laughs with them.

These dates will now continue on a regular basis. Even if it's just for coffee or a walk or basically anything non-errand related it's nice to show them how special they are, just on their own. And I've got to admit that not being outnumbered by children on an outing outside of the house is a treat for me all in itself!