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


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.