Friday, March 31, 2017

Downs and Ups

As many of you know, it hasn't been a great week. Last Saturday, just before leaving for our final ski trip/spring break adventure, Jordan took a misstep in the garden. BAM! Like that, all plans changed and off we went to the ER with a rapidly swelling, incredibly painful, right knee. His good knee I might add - not the one that has already been through a major injury and three surgeries.

After both an x-ray and a CT scan to ensure nothing was missed, it was determined it was "just" a bad sprain. He was fitted for an immobilizer (a brace that runs from crotch to calf to keep his leg straight) and crutches for the next 6 weeks. He was also given the somewhat grim, but realistic prognosis that it would be six weeks like this, with more like 6 months of recovery.



Now before you think "oh poor Jordan...but it could be worse" let me stop you right there. OF COURSE it could be worse. And you know how I am sure of that fact? Because we've been through worse. Several times actually. So in the grand scheme of things we know this is just a little setback. But we weren't immediately thinking big picture when we were faced with the immediate reality of WHAT NOW?

Cause you know, for starters, there's Asher. How does a man on crutches help take care of Asher? Well, he doesn't. So that's large obstacle number one. But then there were further challenges - like this happened on spring break when he was going to be our childcare. And Rio and I had a girls weekend planned for months. And he can't drive. And he can't shower or dress himself. Oh and he works on the third floor of a building with no elevator. So ya, could definitely be worse but certainly could be better. The bottom line is that when a parent of a child with intense physical needs goes down unexpectedly, life kind of falls apart.

So there were a few days of a pity party. I hate feeling sorry for us but sometimes life is just hard. So I cried and stressed and vented to friends and my guts were a mess - but I worked out a plan. We dealt with our respective jobs and childcare. I more or less figured out that being a single parent for the next bit is going to be a lot of work but certainly possible. We brainstormed ways a sitting Jordan could lift Asher so Rio and I can still go away today, and Jordan even figured out how to get himself showered and dressed without me. I've gotta say, having an accessible shower and shower chair have worked out really well for us! And also, this little dentist office toy - wow, who knew it would become an honest to goodness accessibility aid for a very tall man who has no way to touch the floor!



So the pity party is over. The next few weeks are going to be rough, but not impossible. And instead of focusing on the fact we seem to have bad luck, I'm focussing on a whole bunch of really exciting things that all seemed to happen to me at once the other day -  choosing to look at that as a sign from the universe that even though some bad things seem to keep happening to us, some truly wonderful things happen too.

So, life is pretty great - challenges and all. Sometimes I just need reminders of that. And who better to remind me than these three.


Happy Friday and enjoy this beautiful spring weekend! We plan to.

Thursday, February 9, 2017

Splashy

Our friends at Firefly by Leckey are at it again! I introduce to you the new FIREFLY SPLASHY, a portable bathseat designed by the awesome company who brought us Upsee, the GoTo seat, and the PlayPak. As with their previous products, I was thrilled to have Asher test drive one and tell you what we think.

“What is the Splashy?” you ask? Well in the words of Firefly themselves, in their handy Splashy Activity Guide:

The Firefly Splashy is a lightweight bath seat, designed to sit low in the bath to allow your child to benefit from being immersed in the water… Splashy’s design is based on the GoTo seat, with additional new features to allow your child to participate in bathing.

A recline feature means that even children with reduced head control or sitting ability are able to use Splashy. We have added interchangeable foam supports which can be used as a headrest, lateral, pommel or anti slide support. Splashy has a five point harness which can be configured into a three point pelvic support to make washing a little easier. Splashy has a comfortable, warm touch foam covering available in three colours.


Here’s a few infographics, just in case you like pictures better than words:





So now that I’ve given you the background on the product, let me tell you a little about what we think of it. Maybe I’ll let Asher show you himself:


We love it, how about I start there?!

It really is lightweight, simple to assemble, easy to configure for your child’s needs. And it even looks good! As usual, I am incredibly impressed by the craftsmanship of Firefly products. It is incredibly well made, durable, and no attention to detail has been missed. All of the strapping is soft and comfortable, making it nearly impossible to pinch your child’s skin in one of the clasps. And let me tell you, when you have a squirmy child who cannot sit on their own, pinching their skin otherwise happens way too often.

As you can see, we used it in our large shower for the purposes of trialing it – only because our shower is so big and it was easier to make the necessary adjustments. However, I did include a photo of it in our tub to show how nicely it fits:


This photo is also a good illustration of how we chose to configure it. Asher doesn’t like chest straps, so we went with a three-point harness rather than five-point. But he also has a really difficult time not scooting his bum, no matter how well he is harnessed, so we used three of the five included bumper pads to prevent his bum from scooting forward or off either side. I felt like Asher was completely safe and secure, and given all of the options for where the strapping and bumpers could be placed, I have no doubt other families could configure it in a multitude of other ways to suit their child’s needs.

In full disclosure, this will not be Asher’s primary bath seat. He predominantly showers, and will continue to use his Rifton HTS bath chair for that. However, it has been a long, long time since Asher has been able to have a bath, so now when he does, we can say YES! thanks to the Splashy.

Additionally, have you ever thought about how a heavy child who can’t sit on their own can bathe while on holidays? No, you probably haven’t if you have a typical child. But for those of us whose children can’t sit, that is a struggle, and something that always needs to be considered when traveling outside our home. When Asher was younger we would shower holding him, but now he is far too heavy for that. Thanks to the Splashy, that problem is now eliminated! We can take this with us, whether it be staying at someone else’s house or a hotel. With one click it folds up to be flat, light and easily transportable – either to be packed in your car or just put away in a closet when not in use. 


Once again I can truly say that Firefly has exceeded expectations with this bath seat. It’s easy to use, safe, and I wouldn’t change anything about it. Well actually I take that back – if I could change anything it would be that this seat existed about six years earlier, making life in a tiny bathroom with a baby/toddler/preschooler who couldn’t sit oh so much easier!

So now Firefly, since it seems to be in your mandate to design amazing special needs products that don’t already exist, I challenge you to this – how about a portable toilet seat for those kids who are toilet trained but can’t sit on their own. That’s not too much to ask, is it?!

Thank you Firefly for this amazing opportunity. This bath seat will be well used – by us, but no doubt countless others.

To check out more details, including shipping and return policies, click here.  

Thursday, January 26, 2017

The Windy City

Chicago. Oh my. You exceeded our wildest dreams.

When I started planning this weekend in August as a surprise for Jordan's upcoming 40th, I had so many hopes. Would I be able to get Blackhawks Canucks tickets? (Yes). Would I be able to get a table at Alinea? (Yes). Would I be able to keep it a secret from Jordan? (Yes). Would I find a hotel in the perfect neighborhood? (Yes). Would all else fall into place with jobs and babysitting and and and? (Yes, yes it all did). Would we perish in some Trump-related terrorist attack? (NO!) But I still didn't imagine that we would have so much fun.

The city itself - beautiful. An amazing mix of old and new architecture perched on the edge of a great lake and on either side of a river make it a sight to behold. It's clean, it's easy to get around, and despite knowing otherwise, it felt safe. Police presence was strong, but non threatening. I could have walked around exploring for days.


Alinea*. Well. I don't even know which adjectives to use. Unbelievable? Exceptional? Outstanding? Yes, yes, and yes. Basically Grant Achatz is a culinary god and deserves all the praise he has received, and then some. And on top of an outrageous meal, the service was impeccable. Light-hearted, friendly, and completely non pretentious, yet our every need was anticipated. Worth every single penny (and trust me, it was quite a few pennies). Seeking out three star dining is now at the top of my bucket list.




The Canucks Blackhawks game. So the Canucks lost, but come on, I was sort of expecting that. That said, it was probably the most fun game I have seen live. The Canucks looked good, and playing a team as good as Chicago, that was great to see. And I've gotta say those Chicago fans love their team. I mean love their team. Apparently in some cities outside of Vancouver the fans love their team all the time - who knew?! And despite having to put up with four Blackhawk goals, it was hard to not sing along to Chelsea Dagger when the crowd was just so happy! I kid you not when I say 99% of the fans in that arena were wearing player jerseys, and the other 1% were in Cubs gear. I've never seen anything like it.




So ya, to say this was the weekend of a lifetime doesn't really do it justice. When I am lying on my deathbed, Chicago will be one of the features of my mental slideshow.


*If you want to know more about Alinea - watch Netflix "Chef's Table > Season 2 - Episode 1". Prepare to be amazed!

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?