Friday, January 13, 2017

The Real Advocacy

In case you missed it, recently I was featured on a CTV news clip talking about the teacher and support shortage in BC schools. You can see the clip here.

I received such nice feedback about the clip. "You're such a good mom. What a wonderful advocate. You're so articulate.  You looked so great, especially the white coat!". Lovely, heartfelt compliments that I truly did, and do, appreciate. But the truth is, none of that news clip illustrates Real Advocacy. 

Real Advocacy is not a news clip. Or a perfectly styled family photo shoot for a print donation campaign. Or a pre-recorded video for a telethon. Or a newspaper spread. Or any of the "public facing" advocacy we've been featured in. And not to take anything away from that - we always have been, and will continue to be, happy to share our story in order to help others relate. But it's not the true part of where my Real Advocacy is focused. 

Real Advocacy is found behind the scenes. Usually late in the evening when the kids have gone to bed, or early in the morning after tossing and turning all night. It's found in endless emails and phone calls. It's found in having to step outside yourself and be the bad guy when your natural instinct is to be the likeable one who doesn't stir things up. It's found in grant writing and applications.  It's found in going above someone's head when they haven't been professional. It's found in sometimes boring, sometimes pointless meetings. It's found in seemingly endless bureaucracy. 

But mostly, it's found in tears. Anxiety. Stress. Loneliness. Exhaustion. Defeat. And sometimes self-pity, despite your best intentions. It's also found in regret and self-doubt when you worry you may not have done enough. 

In short, nothing about Real Advocacy looks pretty. And worst of all, it definitely doesn't feel pretty. 

So next time (and I can pretty much promise you there will be a next time) you see one or more of us advocating in a way that looks shiny, confident, and articulate, enjoy it along with us. But try to remember that the Real Advocacy happens quietly, tearfully, and very unceremoniously in the background.

Tuesday, December 20, 2016

Five Years Later

So today I went for my annual checkup on my thyroid. It seemed a bit momentous, being five years out from the big C being removed from my neck. But as always, I didn't know what to expect.

Five years ago, half of my thyroid was removed and in the four years since then, the remaining half has been watched. Soon after the cancerous portion was taken out, a bunch of lumps and bumps appeared on the good side. They've always been too small to biopsy or identify much about them through ultrasound, so every year it was "watch and see", not knowing if the ultrasound would change. For four solid years the ultrasound has remained pretty static - not getting worse but not getting better. I was in a bit of a thyroid purgatory - knowing that the lump that was definitely cancer was gone, but that other unknowns had crept up in its place.

This year when I went for my ultrasound, for the first time I felt a bit of peace. I was nervous, but not in full blown panic mode like previous years. The ultrasound itself was super quick and although the tech let on nothing (they usually do let something out to put me out of my misery) I just "felt" it was all ok. Today, leading up to the appointment I felt the same. I didn't want to be too confident in my gut feeling, although it has seldom been wrong.

Here's what I hoped and prayed would happen at the appointment: I'd walk in and he'd once again read the report that said something along the lines of "series of small nodules, less than 1mm". Then we'd discuss what my course of action would be - an ultrasound again in another year? Maybe stretch it out to two? Weigh the pros and cons, have a thorough once over about my general health and then I'd be on my way for another year.

Here's what actually did happen: I walked in and he read the report that said I had one 3mm lump, clearly identified as a benign cyst with no other abnormalities noted. Instead of talking about the course of action, we talked about how they KNEW it was benign. After thorough explanation and reassurance from the doctor, we decided without much fanfare at all, that I would be discharged from his care. Further ultrasounds would not be required because what this most recent image displayed was completely normal and "very low risk". I'd return to my GP for yearly bloodwork and unless something changed drastically with my health or bloodwork results, we'd assume going forward that my medication was doing the trick and my half a thyroid was functioning quietly and UN-CANCEROUS-LY!

I never in a million years expected to walk out of there today thinking the words "Cancer Free". I always assumed those little lumps were there to stay until one day they got big enough to biopsy and we'd find out once and for all. I never thought one would grow enough to identify it confidently as not being cancer and this would all be over. Who knew?

I can't tell you the relief this is. This thyroid journey has been ongoing for almost 7 years. Knowing it was cancer has been more than 5 years. It's finally over and I've just got this teeny tiny little scar to prove it.

I don't think I've ever loved that scar and all it stands for until today. Take that cancer! Just another challenge overcome. 

Wednesday, November 16, 2016

Prematurity Awareness

Over seven years ago now, our babies came into the world prematurely. Way too prematurely. Everyone close to us knows that those five months the boys were hospitalized were the worst of our lives. Every bad moment (of which there were far too many) lasted an eternity; every good moment (of which there were not nearly enough) lasted for only a fleeting moment. Going to bed at night not knowing if there would be another middle of the night phone call explaining how close we came to losing one of them, and waking up every morning wondering what potential devastation awaited us was not something I'd wish on anyone. And having two babies go through it at once meant we never ever had a moment of reprieve - one boy's good day would be matched with the other's bad day - and on it went.

Now, all these years later, the time is mostly a blur. I can't believe we lived like that for half a year, yet we did. If I push myself too hard to really feel that time again it is much too painful to relive - so I just don't.  Prematurity has brought us many challenges, and has left more heartache in its wake than I knew possible. But through it all I remain thankful that despite the million and one challenges my micro-preemies faced, they are alive, healthy, and bringing more love and joy to the world than I ever could have imagined.

So instead of being sad on this World Prematurity Day, I will choose to be thankful. For specialized medical equipment, skilled and confident neonatologists, loving and dedicated nurses, supportive friends and family, and the original Trousdell Trio who kept each other sane in those dark, dark times.

And most of all, for these two, who have changed all of our lives for the better.

Saturday, October 22, 2016

A PSA on Wheelchair Parking

I'm sick of people being jerks. Seriously. Is it that hard to understand that if you have a disabled placard for your car you can park in an accessible spot, and if you don't, you CAN'T? Apparently it is that hard. So here's a few rules for you:

Number 1 - the obvious. DO NOT EVER EVER EVER PARK IN A BLUE SPOT IF YOU DON'T HAVE A PLACARD. Ever. Ever. Get my point? I don't care if your leg is sore. I don't care if the parking lot is otherwise full. I don't care if you're just running in for a second. None of those excuses matter. At all. Can I repeat EVER. In those 30 minutes or even 30 seconds you are abusing that spot, the likelihood is that someone who needs it is missing out on parking there. Don't be a jerk. Just don't park there.

Number 2 - If you have a placard but the person in the car isn't with you, don't park in a blue spot. Got your Grampa's placard that he forgot in your car last time you drove him? Too bad. That doesn't allow you to park there. Again I repeat - EVER. You know how many times I have cursed when I pull into a busy parking lot with a vacant wheelchair spot, and realize Asher isn't with me? Just because I have that blue card hanging in the window, if he's not with me I look for a spot at the back of the lot like the rest of the schlumps.

Number 3 - This one is my personal favorite because it's probably abused the most - if the person the blue card belongs to is in the car but NOT getting out of the car, don't park in a blue spot. So for instance the kids, including Asher, are all in the car. I want to run into Starbucks by myself, leaving the kids in the car. Can I park in a blue spot? No, no I can't. I can only park there if Asher is getting out with me. I can't tell you how often I have driven into a parking lot and seen a 95 year old lady sitting in the passenger seat of a car with the driver seat empty. How much do you want to bet someone has taken "Gramma" shopping with her placard, but conveniently left Gramma in the car? It doesn't work like that!!

I could give you a bunch of examples when not having a place to park has prevented us from participating in an activity - but if you're that kind of person who parks in an accessible spot when you shouldn't you likely don't care. Bottom line is if you park there when you're not supposed to, you're just an asshole. Got it?

Thursday, October 6, 2016

Tegan and Sara

Last night was a night Asher has been waiting a very long time for - the Tegan and Sara concert in Vancouver. For those of you who know Asher, you know that saying he "loves" T&S is a huge understatement. #1 fan would be more precise.

Long story short, the concert did not disappoint. Although all of it was a little overwhelming for Asher when we arrived at the venue, once his ladies went on stage he was settled right in and ready to rock for two solid hours. They put on an amazing show and we all had SO much fun. Although the wheelchair seats were slightly separate from where the rest of the family was sitting, turned out there were no other wheelchair patrons so we could all sit together. Not to mention that Ashy's bestie from school was there with her mom and they came and found us and were able to sit with us too. Ashy had all his loves in one spot. It was pretty special.

As we were leaving the theatre the usher stopped me and said "You have a very sweet family". Why thank you, I couldn't agree more. I am so glad we chose to bring all the kids to experience this and create memories that will last them a lifetime!

And now a few photos:

Brother losing steam....

And when all you want to do is go in your room and eat cheetos at 11:30 pm and you're locked in the hall because dad demagnetized the keys...

Thursday, September 29, 2016

The End of an Era

Ok friends, here it is - time for a new adventure. Things are going to change around here.  But first I'll back up a bit.

A couple of years ago I decided I wanted to change how I blogged: less in the minute, live blogging of all the multitude of mayhem that was happening in our lives, and more well thought out posts that my kids would have a better understanding of. That worked, for a while. But as the months and weeks passed, this blog started getting less bucket filling and more bucket emptying. It seemed like a chore to have to write, and I felt like a let down if I wasn't giving at least semi-regular updates. Not a good feeling to have when I have enough real responsibilities in life that can feel that way at times.

I knew I didn't want to quit blogging all together though so I didn't know what another option was. So I just kept going. And the posts got fewer and fewer between. So as a remedy, I started short Facebook posts on the Trousdell Five page, instead of regular blog posts. And for a while, that worked - until I lost my oomph there too.

Over the past couple of weeks there have been a couple of totally unrelated incidents that when I thought about them together, gave me a real insight to my life. My issue is not this blog - it is with my own identity. (Cue the midlife crisis).

For seven years I have identified with being a mom who has lost a baby, had twins, weathered micro-prematurity, and now lives with two children with a disability. In that, I think I lost the ability to identify with myself. Just plain old Tracey.

Now don't get me wrong, for many many years, that needed to be my identity. We were in survival mode, navigating all of these new challenges and trying to do our best to get by, maybe even thrive a bit, with some grace. But it's not like that any more. It's just life now; we're just living it. No more "defining the new normal" or "surviving and thriving" or any of that stuff. Just real life.

And of course I still identify with those things, in large part. For as long as I breathe I will continue to be an advocate for cerebral palsy, inclusivity, and prematurity. But it doesn't mean my whole existence needs to be wound up so tightly with them.

So the first step to getting Tracey back is to lose the Trousdell Five identity online. I will continue to use this space to mostly blog about my children, but not under that name. You'll notice some design changes with a new banner and different tabs. Less them, more me.

That also means the Trousdell Five Facebook page will be gone (more on that in a sec). Instagram and Twitter are also just in my name now. And while these aren't monumental changes that took more than a couple of seconds to make, they feel huge to me. I have always said "I will not let Asher and Nolan be defined by Cerebral Palsy". Yet somehow I managed to let that happen to me?!!

So here's what happens now. I keep blogging, when I feel like it. I will share those blog posts on my personal page on Facebook, and make those posts public. For those of you who follow the Trousdell Five page and will no longer have access, you can go to my personal page and click the "Follow" button on my cover picture. That will give you access to any and all of the stuff I post publicly, leaving anything I want to post privately just for my friends and family.

I also continue to be a voice for CP and prematurity. I just no longer make myself feel like that is a voice that needs to speak louder than anything else I have to say. And as for real life - well I’ll keep on keeping on, trying to take good care of myself so I can take the best possible care of my family. It makes me sad to end this chapter, absolutely. But also excited to see what lies ahead.

Onwards, to the next adventure life brings us. Thanks for your understanding and support. Here's to what's to come...

Love Tracey
(still and always, proud mama of the Trousdell Five)

Don't Let the Pigeon Drive the Power Chair!

If you are a parent of small children, you know Mo Willems. He has such great animated characters, including that pesky pigeon.

In Grade 1, Asher and Nolan's teacher did an author study on Mo Willems, including of course, the hilarious "Don't Let the Pigeon Drive the Bus"*.  During that time, one of the EAs in Asher's class decided, along with Asher, that they would create their own Mo Willems book. I saw the odd page here and there, but then promptly forgot about it. Summer passed, and it was far from my mind.

On the first day of Grade 2, that EA presented Asher and I with a surprise. She had Asher's book printed hard cover. It is absolutely amazing. She got a copy made for our family, and one for the school library so all the kids in the school can enjoy it.

While it's obviously the most fun to sit and read the hardcover book in your hands, I realized I needed a good way to share it with all of you. Lo and behold, some pretty easy software exists for making flip books online. A bunch of photos and a PDF, et voila, I'm a flip book master!

So without further ado, I'm am so excited to share Asher and Lindsey's creation with you. All text  by Asher (on his iPad) with awesome illustrations by Lindsey. Please click here to see the book. 

DID YOU LOVE IT OR WHAT?! How cute was that?! We are so thrilled with this amazing surprise and our family will treasure it. Thank you Asher and Lindsey for this masterpiece!

*In case you're not familiar with the original by Mo Willems, you can check it out here.