The Daily Hailey

It was a good year ago now that Brady lost so much more mobility and became fully physically dependant on his wheelchair. Losing his ability to stand and walk has been challenging to say the least, but like so many of you say to us, he has handled it with so much grace, as well as a whole lot of dark humour. There have been lots of aspects of our life that have changed in this last year surrounding Bradys mobility, and I haven’t hashed them all out on the blog, of course, but I do want to share about one today. 

Remember this picture? 

Brady sent it to me from his drive home from Edmonton the other week, and I cried when I saw it. Pumping gas has been an unexpectedly loaded battle. Let’s talk about it. 

The last time Brady filled up was really, really hard. It was over a year ago, when he was still able to stand but there was definitely something wrong. On this particular day, Brady brought Rowan to parkour in the evening. All the seating is up in a mezzanine, and stairs were almost impossible at that point, so he dropped him off and went to go fill up the van rather than staying to watch. He drove to Costco and got out to fill up. And it might’ve been ok except he dropped his credit card. And when he bent down to retrieve it, it got away from him. And he fell. And he couldn’t get back up. His legs just would not do it.

He ended up being hauled off the ground by two older ladies. They were so kind. They helped him back to the van. Hiked his pants up. Made sure he was stable. 

The most discouraging. The most vulnerable. He was so so sad. 

He told me about it on the phone later. He knew I needed to know. But he knew it would be devastating news. My heart absolutely broke for him in that moment. He assured me he was ok now that he had his cry, and we would move forward. 

Which we did. 

But filling up became an issue. Of course he could get out and do it, but it would be the whole operation of getting his chair out of the van, transferring into it, being in that tight space between the pumps and the vehicle, waiting in whatever weather, finishing up and transferring back into the van, dragging the chair in after him. So it takes a lot of energy, of which he has less since that last big change in mobility. So we looked for a different way. Full serve is cool but not when the tap on your card doesn’t work. Brady found himself giving his PIN to random gas guys, which doesn’t feel great. Especially with the amount we drive, he was going back regularly and people were remembering him. Not that there was ever a sign of impropriety. But still, its not what you want. Eventually, we settled on Brady keeping some cash on hand. That way he can just ask for $50 and go on his merry way. Its not the ideal, of course, but it works, and we don’t require ideal. Above ideal, we’d like independence for Brady, and this makes that possible. 

Seeing him fill up with gas himself for the first time in over a year was incredible for my heart, and his as well. Not that he couldn’t have before. Because he could have. But there was some underlying pain there, for obvious reasons, and he didn’t want to. Something about this felt like it brought a little healing. He chose to do it himself, and was successful 💪

I think I need to do an update post about Brady soon. It’s been a while. But this feels like a really nice place to start 💜

🎶 Oooooooooh the weather outside is frightful,

Nuff said.

😒 ❄️

Have you seen how paint companies advertise their “color of the year?” How they choose a color they deem to be trendy, and splash it around online in hopes that we all follow along? I do get it. Sometimes they’re really nice colors, and they’re fun to zero in on. To see what people do with them. To see what contrasts well with them. I can get behind it all.

Turns out our family has a color of the year as well! Or at least a color that will trend in our home now, possibly forever. It was just born to us today at the breakfast table.

As Waverly described an article of clothing someone had worn recently, she referred to it as (ready?)…

DARKY WHITE!

Absolutely everyone at the table LOST it 🤣 Conveniently, Wavy can really take a joke, so she laughed, too. It took a good while for us all to come back to reality after that one, but once the room had quieted a little, she said “Ok, but seriously, it was darky white…”

Behold 🙌 The creator of darky white herself, wearing what I think constitutes as a darky white cardigan, just so you can get a visual.

Let’s make this the color of the year, guys. Forget paint companies. Support Wavystyles!!

Good luck out there today 😬 The sky is looking pretty darky white…..

We were fortunate enough to have one of our babe’s siblings over for the morning. It was fun and exhausting and a really good experience! Some parts felt sad. It was pretty eye opening in terms of the different methods of care and opportunities. But! I was so pleasantly surprised by many things.

I LOVED hearing both Spoons and LD call our newcomer by name! Sharing toys. Managing feelings when sharing proved to be challenging. Newbie shared snacks at the table. So many inquiries. So many new things to check out and explore.

At one point in the games we played, I was informed that the moon was out and it was time to nap. I was brought to the recliner, and my babes, plus the sibling, all piled on the chair, some on top and some beside. Glasses came off. The singing stuffed animal was activated. We even had some blankets. And we just. Lay. Still. When I got up to help Munchie on the floor, I was quickly informed that the moon was still out. So back to naps we went.

After that, I had a small child velcroed to my side. It was sweet, and I’m very glad we were able to support a sibling visit in the home. I observed a lot of things, and gained some experience, I think. But it was encouraging 💜 This will not be our last visit for these siblings, or many others, I’m sure.

Today, I took a handful of the kids for a walk after school. I loaded up the babies in the beast wagon. I filled some sippy cups. I put on shorts!! And off we went to the town office to get a fresh criminal record check. Nothing too crazy. But an excuse to get out, and to do it without rushing in the van to try to get back as fast as I can. We just moseyed. Took our time. Got our sweat on a little. I loved it.

I know the forecast says more snow. Like. Right away here. Which is a huge dumb bummer. But I REALLY enjoyed going for a walk in the sun in shorts and a tank top, with all three babies in short sleeves, totally comfortable. My anticipation for summer is growing by the day, and today, it felt more real. Like it was actually going to come. Someday. We will be back at camp.

While a big downer of Spring is the weather for me, I do love the addition of rubber boots to all of Wavy’s ensembles.

The girls Spring performance is not far off, and while she will obviously wear her ballet shoes for any actual dance, I LOVED seeing this look. I loved it a little less after her tights hit the mud puddle in front of our house.

But I suppose thats Spring for you!

Right now, LD and Spoons are big on “come ON!” It sounds like an eye roller statement, but its actually an invitation! If Spoons wants LD to come please, there is a loud “Come ooooooon” and an excited face to entire LD to join. Its VERY cute.

Just the other day, I had been out of the room while all three babes were in high chairs. When I re-entered the room, LD was a little concerned and called me over.

“Come on, mommy!” Arm outstretched in my direction. So I came over for what I thought was a hug. Sometimes I’m invited for high chair hugs.

But that day, LD reached for my hand. So I offered it, and we clasped hands. And as though LD isn’t already basically perfect, they simply went back to eating their noodles. Totally normally. Just needed to keep me close, holding hands.

Those are the parts that make my heart truly ache. SUCH warm attachment. SUCH a good bond. For how long, no one knows 💜💔

I’d share the picture but I’m not allowed. You’ll just have to trust me that it was SO lovely. 🥰

Have you seen the reels and memes online that joke about men “training” to join their wife in the shower because the water is so stinking hot? That was the first thing that came to my mind after Wavys bath today.

She loves a good hot bth, to which I can unequivocally relate. The burnier the better! But today, she came out HOT. She told me that she dunked her face into the tub and now, it hurt. She definitely looked like her bath was too hot, hahaha! But she was happy and sweaty and I have no beef with that.

So. Those red patches? They’re still there. Bright red right specifically below the outer corners of her eyes, and on her neck. She asked for lotion, insisted on lotion, but of course, it burned the flesh 😬

My little girl with her patchwork face is totally fine. She says everything feels way better now, but she did indeed burn her face 😅 not sure how the rest of her body didn’t burn to a crisp, but I’m glad it didn’t. Just that delicate face skin couldn’t take the heat, I guess. Its ok. Still cute! 💜

You know how I feel about little guys learning to spell. Its my favorite thing. Actually, not as much their learning to spell but their inability to spell. You get it. It is SO adorable. Mix a little french in there and everybody wins!

Today, not only did Wavys spelling kick butt, but her drawings were pretty much perfect. 👌

I love both of these SO MUCH. She is hilarious, and creative, and totally unashamed of any of the work she does. She is such a little free spirit 💜

I love you, Waverly!! You write and draw beautifully. I’m very proud of you!

Brady and I are barely “evening apart” people, so two nights and three days feels like a long stretch! Add to that his mobility changes since he’s travelled alone, plus the promise of a snow storm, I have REALLY wished he was home. But this evening, the dream comes true because he is on his way!!

They wrapped up some morning training, and rather than going to lunch, Brady went to Ikea to make a pickup for us! While we are fairly desperately purging this house, we are eager to find ways to make the house work well for us. A huge chunk of that is getting rid of clutter and furniture that isn’t working, but another part of it is replacing it with things that do work. So we ordered a few things through their click and collect option, and someone came and loaded it up in Bradys van! Heyooooo!!

Post-Ikea, Brady filled up and grabbed some lunch at Wendys. This picture actually just destroys my heart, but in a fabulous way 💜 It has been a LONG time since this man pumped his own gas 💜 There is a whole story there. Maybe for another day.

Look at how handsome he is!!! 😍

As the snow has started to swirl, please carry my man in your prayers! Thankfully, he left in daylight and should make it home still in daylight! I am SO looking forward to spending the evening with him, and hopefully a coffee in the morning as well. My favorite person right here. 🙌

Lord, please bring Brady home safe!! 💜