The Daily Hailey

We had this great idea. Dekker isn’t into it, but I sure am. Get ready.

We learned the other day that the high school in Warman offers commercial cooking. Commercial!! Isn’t that awesome?? I would’ve been ALL over that as a kid! As we talked about this, Dekker said he thought maaaybe his high school offers the same thing. He’s not completely sure. He says he’s read it on a calendar, but its not been offered to him yet, so he can’t say for sure. I got super excited and was about ready to bully him into taking it when he’s older, until I realized it would very likely be offered at the same time as Industrial Arts, which is WAY higher on his list. SUCH a bummer.

Brady had a genius idea in the moment, and suggested that Dekker become a fancy pants baker, and that he learn to construct vastly complex cakes, where he can both bake commercially as well as build the structures to support the large cake on top.

Dekker politely declined.

But!! If he did become a grand cake baker – he should name his business…

*drumroll*

Dekker Ate Cakes.

You’re welcome.

I know how to spell it. You guys know I love a good play on words.

My two smallest big kids tend to butt heads quite a bit from time to time. You guys know how it goes. There are stages of who clicks with who at whatever point, and it shifts from day to day. Everyones loves each other, but some don’t show it quite as well as often You get it.

Today, Wavy and Solly struggled this morning. Pestering and kicking and fighting and finally, taking time apart on purpose. Now, we’ve moved into intentional together time, and its working!!!

I bought this cute National Geographic puzzle from VV a while ago that was very Nemo-esque. Today, the two youngest are working on it together!

They both have their own ideas, but they’re managing their differences surprisingly well and smoothing things out as they go! Its cute. They’re both attempting to teach one another how to best do puzzles Meanwhile, the hum of a bobcat whirs nearby as a loving man from the community clears our yard of snow. Once the ground dries out, he will re-pour our front ramp to make it easier for Brady to use. Longer, with a gentler slope. As a gift to us.

So there is blessing to my left, of my children working to be friends, and to my right, with an incredibly generous friend helping our family in a large, practical way.

It doesn’t need to be said that our life is incredibly challenging right now. Yet in moments like this, it is plain to see we have it SO unbelievably good. Praise You, Lord, for all you give us, teach us, and prepare us for. We love you, no matter the circumstance.

Today, I didn’t pick up a call that was an obvious scam. I laughed the moment I saw it and took a screenshot.

Right?? Like. It doesn’t feel like a familiar number… I’m not sure I know them.

So since I screened, it showed up as a missed call. And then this message had me folded over, belly laughing

“You got cry I will go back to talking.”

Someone must’ve been VERY sad I didn’t answer their call!

Anyway. I enjoyed the laugh. We could all use those from time to time. Especially during these kinds of times

Brady came home after radiation today so I could let LD and Spoons nap. I packed up the Peanut (Ha! Packing peanut) and hit the road with Rowan to go back to the eye doctor! Of all the kids, he has definitely spent the most time there, with his initial vision score of 20/200 At his most recent appointment a few weeks back, our eye doctor had decided to try a little tweak in his contact, and it had arrived, so today we went to go try it out and see if it made things better or worse. Conveniently, today was a glasses day for him, so we got to see that cute look for a little first before it was contact time.

He’s such a sweetie

As it turns out, his previous contact was better, so this was something, but not the winner, and thats ok. Its always worth a try to have his vision the best it can be! With his contact in, his vision is up to 20/30! This is ENORMOUS progress from where we began I am SO thrilled. Another appointment in six months. We cross our fingers and toes that it can be the end of patching at that point!

We headed home in good time, but not early enough that I felt like sending him back to school. So as soon as we got home, he took off on his scooter and ran an errand downtown for me. Then he waited for the kids to get home, and once jobs were done, they ran outside to have a snowball fight, which they started doing when their cousins were over, and were SO enjoying. Then, Rowan asked permission to go delivery papers with his friend from school, and he had SO much fun!!

Ro was happy today, and we had a lot of fun together I love that boy.

Another day of work getting done around here. Some furniture was lovingly hauled up our treacherous stairwell. Babies were fed and dressed and played with. I sat and took breathers. I crocheted in the afternoon. It was a genuinely beautiful day filled with help and love and softness.

My mom brought supper, and we shared supper with the group. The kids played a rousing game of telephone as they ate, and the rest of us sat in the living room and tried to have a conversation over top of the loud bellows of laughter. It was honestly just so awesome.

Today was radiation fraction #5. 5/25. 1/5. 20%. However you want to look at it. It’s a chunk anyway, and I’m glad its behind us. Only one more month to go

I am more than ready to tuck in for the night, though. Its time. It was a really lovely soft day with family, and now I’m ready for some comfort and rest with Brady. We are both so tired, but SO happy to be together with everyone. No regrets whatsoever.

Sleep well, all Be well and warm.

I had the pleasure of spending the afternoon with Brady. A person doesn’t anticipate doctors appointments being dates, but its really, really nice to spend that time together, however it happens.

Brady came and picked me up from home and we drove together to City Hospital for his first outpatient rehab appointment in three-ish years. It was honestly a strange mix of odd and lovely to be back there. Sad and weird to have to go back to the hospital because you lost all mobility and feeling you had left at your level of injury. But quite sweet to see familiar faces in familiar places, and know that these people want to help you, without a doubt.

Bradys PT, Kari, greeted him with a hug, and back we went to go over all the history of the last few years. There was a lot, and it was clear on her face that she really cared about our situation and that she was happy to be connected with Brady again, but also loaded with empathy.

She did some basic tests – ones we’ve done hundreds of times – and confirmed his level of feeling and strength. None, and none. We talked details about what our immediate needs are, and at most angles, we would say “I know this is what you need, but we need an OT to request/apply.” So the goal is to get Brady reconnected with an occupational therapist, as well as home care. With this, we can have our house assessed and possibly apply for some funding to help us change what NEEDS changing. Possible lifts. Possible bathroom renovation. Mattress assessment. Etc etc etc.

We talked armrests for his wheelchair. Possible different backrest. Commode chair. Shower chair. We talked about getting Brady into our van again.

We talked about getting reconnected with the physiatrists on staff. That sounds made up, I know. They’re doctors of physio, basically. If we can get connected there, we can get even more weight behind some applications for funding. Also, Brady can get further information and help surrounding bladder and bowel care, as well as pressure sores, compression items, etc.

Goodness we are living in a WHIRLWIND right now!

After rehab, we picked up coffee and headed over to yet another hospital for radiation. We made it to the cancer centre on time, which happened to be towards the end of their day. It was quiet, yet the staff was so bright and friendly. I have to say. The people who work at the cancer centre in Saskatoon are AMAZING people withe BEAUTIFUL bedside manner. It is hard, because the communication in the entire building is among the worst we’ve ever come across :/ Which makes it really easy to HATE the place. But the people working there are so stinking lovely, it almost feels nice to see them. Even though no one wants to go there absolutely ever.

Anyway. Radiation takes longer now that Brady can’t get onto the treatment bed on his own anymore. Three people work together to get him lifted up and onto the table, and to get him straightened out, legs propped, scary mask on. The RT machine that they usually use for Brady was out of order, so he was in a different pod with a different machine, and a different lift. Instead of the ceiling track lift, they had a crappy little hoyer lift, and it suuuuucked But it was funny. Brady swayed back and forth in his swing He’s such a big boy!!

I tease, but I’m allowed, I promise. Brady is not mad at me. He’s all sheepish and cute, hey?

The treatment itself was quick and easy, and home we went. We came home to most of the kids, and the rest followed very shortly. My mom. My sister. My brother in law. Their kids. The place was bustling and energetic and happy! Supper had also arrived! Thank you, Danielle and fam Delicious!!!!

A worky morning had continued after I joined Brady in the city, and the house is looking so much tidier and more organized. What a gift we were given today. While the nieces played hard with the babies, the rest of us worked, and there is promise of more to be done tomorrow. We are SO grateful for their trip out and all of their warm willing efforts to help us.

Its been a beautiful day. Also a gigantic day. But a very purposeful, fulfilling, productive day. And I am POOPED. Anyone else completely ready to hit the sack??

It was a really precious day over here Brady and I got to sip a coffee together in bed before getting up in the morning. We spent a bit of time tidying the house up a little bit, but not too much, in preparation for my mom, and my my sister and her family to come spend the day!! It was incredibly special to be together again. They came out on their school break, which is different from ours, with the goal to see us here and there, and put some time and work into helping us set up the house and do some of the things we can’t really make happen right now. As you can likely imagine, there is a LOT going on over here in terms of setting up the house and reorganizing things to be more accessible, as well as helping me catch up on some jobs that have just gotten away from me and now feel unbelievably daunting. I am SO grateful. We will part ways regularly for supper and the evenings, but our children will still see each other a few times while they’re out. Its definitely still their break, and they should have FUN! But I’m SO grateful they also want to help us out with our life things as well. What a gift.

Today, while we caught up over coffee in the living room, someone reached out to me and asked if they could drop off a meal. Not someone who has signed up for our meal train (which is almost FULL already, guys! Amazing!!! Thank you!!!) but someone who just decided to put in to show love and support How incredible!!

And then! As if we hadn’t been showered with love and care enough, yet another person reached out with the offer of a meal! I responded with many thanks, and said we had supper worked out for today but I’d still LOVE to have a batch of what she knows to be my favorite soup, but she insisted she’d like to bring it fresh, so we chose a different day later this week.

You can’t make this stuff up. I cannot explain how beautifully covered we have been by those around us, but people – God is using you!!! THANK YOU for listening and obeying and putting into our lives!! From the fresh meals to the freezer meals to the baked goods to the grocery hauls that have walked through this door, you have saved me hundreds if not thousands of dollars, and hours upon HOURS of time, both of which are incredibly valuable.

It costs an immense amount of money to have a disability, and now the entire game has changed, and we are on our way to purchasing Bradys new necessities. So our saved dollars are going to really important things! THANK YOU for sharing so generously with us! And time is enormous and important and we don’t have a ton of extra of that. This makes it easier to be out at appointments, at kids things, and hauling and caring for babies without having to worry about standing and sweating at my (very beautiful new enormous) stove. Not that I don’t have help in the home, but there are more limitations, and realistically, there is more that rests on me now. I’m happy to do it all, but having meals made is a HUGE saving grace while we adjust to this new normal.

Its been a really nice day. Tomorrow holds more beautiful things. Kids to school. To their activities. Brady to his rehab appointment at City Hospital! And I get to GO WITH HIM!!!! Ack! Radiation fraction #4, and home to another supper brought to our door How in the world does it get any better??

Praise the Lord for EVERYTHING. He is still good, no matter the circumstance!

Today has been a great balance of work and rest. We got some jobs done around the house, a few done at my moms house, some things delivered to different houses around town, some party mix made, some kids bathed, aaaaand a few other things, I think. It was a good, albeit tiring, day

As the daytime peters out and I’m half tucked into bed as I type this, I am truly full of joy.

As Solly would say, “And can I tell you why?”

After our day seemed to be on its way to wrapping up so nicely, we were hit with a bit of a discouragement that brought some chaos and disorder to our peace. It was manageable, of course, but changed the plan and added a level of struggle. And we’re not exactly at level one on the struggle bus, so little added struggles sometimes feel monumental.

When the dust settled, I found my three kids who were still up – Dekker, Laela, and Rowan – playing cards in the living room.

Trust me when I tell you that I know this doesn’t seem like much. Except that this NEVER happens. My kids LIVE to read, which is cool, but also sometimes it totally sucks because they neverrrrrr talk! So, no joke, lately I’ve vetoed daytime reading. No more of it. Unless its for school, they don’t read in their free time. The only time today that I said they could read was before bed, because that is absolutely always the case. Before bed is wind down time, so reading is perfect!

And today, they opted to play cards. Only Laela really cares to play cards. The others are less interested. But they were all sprawled out on the living room floor, laughing like hyenas, playing cards. Kings Corner. I don’t know how to play, but Dekker taught them.

I know its small. I know this. But it filled my heart with gratefulness, and I want to remember that

I’ve mentioned it before, but we were given a stair lift a few years ago. Someone had offered us one, but upon them turning it on to check it out, it didn’t run. They said it could be just a small simple wiring issue, but they really weren’t sure. Rather than working to figure it out and sell it, we found it plunked on our driveway the day we came back from the elementary schools performance of Frozen Jr two years ago. It didn’t fit the stair setup of our modified bi-level at the time, but we were very grateful and packed it up to see where we landed next.

Fast forward to moving last year. We had good plans to get the lift installed basically as we moved in, just so we wouldn’t have to later. Not that Brady needed it, per se, but we knew eventually he would, and why not have it in place before then!

But then had that seizure and messed everything up And then brain surgery, and then all kinds of things, aaaaand now we’re here, super needing it.

A loving friend came and got the thing up and running recently, and even installed it in place!

And tonight, we officially cracked it out so Brady could go downstairs, and we could have a movie night

Ok so I forgot to take a picture of Brady in it today, but Dekker rode it the other day

It was a little hands on getting him down there, lol! That wasn’t the lifts fault. We are still hoping to find a second beater basement wheelchair for him to move around in, but since we don’t have one, Dekker disassembled his chair, and he and I carried it down, piece by piece, overtop of Bradys head as he sat perched at the bottom of the stairs. It was definitely a bit of a labour of love, but we definitely love him and have no regrets It was very much worth it.

I am SO grateful for this lift. It means Brady can actually go downstairs where we can do fun things as a group where we fit a little bit better. We could not have it without the generosity of someone at Brady’s work, gifting us the lift originally, as well as that of a friend here in town who came on more than one occasion to get it set up for us.

Thank you LORD for consistently providing ALL we could want or need!

Radiation, chapter three.

We begged and pleaded for an earlier start date, and the cancer centre insisted we wait until this Thursday. We bugged further and spoke to our doctor who, in turn, spoke to Bradys radiation oncologist, and he was receptive to the information he received and said he would try to get Brady in on Monday or Tuesday rather than waiting.

No call Monday.

SO SICK Tuesday. Didn’t chase. Wasn’t worth it.

Wednesday was a better day. We had accepted treatment the next day. So naturally, since we had stopped pushing, Brady got the call for his first appointment to be that afternoon. Wednesday. Bumped up a single day. It wasn’t much, but it was something! He took the appointment slot.

Thus began radiation chapter three.

Brady is feeling well. He is eager to get the ball rolling, so it feels productive to be back at it. Not that he’s happy to be in cancer treatment. Of course not. No one wants to be in cancer treatment. But if we’re being blunt, the man has a lot to live for in spite of a really crummy diagnosis and outlook. So, to treatment he goes!

Most notable difference so far is the fact that he can no longer heave himself onto the bed for the therapy. They bring in a lift each time to put him on the bed and help him off. Yes, thats how much his function has changed. Which is wild considering it was SO recent that he was standing, sealing up the island top that is so vastly less exciting. Who even cares about that anymore?

*crickets*

Anyway. Radiation 2/25. The countdown is on. Debating whether or not to do a Facebook prayer countdown like last time.

God is BIGGER than cancer and STRONGER than treatment!!