The Daily Hailey

Yesterday was a really nice, really special day. But as tends to happen after days that carry some emotion, some people struggle the next day. We’ll pair some emotional weight with the gloomy weather outside, and my big kids were so uninterested in going to school today :/ Poor big kids.

Dekker was a little grumpy, but not too bad. He was expecting a snow day, because of the bad forecast, so when he found out there was a change of plans, he was a little discouraged. Now, don’t get me wrong. Dekker actually really likes school! But he is very much a homebody, and a homebody who doesn’t like unexpected change. So, he wasn’t thrilled this morning, but he was ok.

Laela, on the other hand, couldn’t quite nail down her feelings. She insisted she felt sick, but ate a normal breakfast and drank milk no problem. She had a tummy ache and a headache. She was sluggish to get ready for school, and said she didn’t want to go. Yet she loves school. So I decided to tuck her back into her bed with a book and let her stay home at least for a little bit.

She surfaced after about an hour saying she felt mostly better and wanted to go play downstairs. The moment I suggested that, if she felt well, maybe she could go to school, she got so upset and her story went all over the place. It was pretty obvious to me, as her mama, that she was overwhelmed more than sick.

I held her close for a while on the recliner, and debated whether I should bring her back at lunch, or give her the day, or take her right in. I just didn’t know. I tucked her into the chair and called the school to see about schedule blocks and what was best. When I came down, I had decided to take her to school, and as soon as she heard that, she popped up and started getting the final stuff ready to go. She wasn’t upset at all. Just accepting.

I drove her to school and she was perfectly content going in. Didn’t really feel sick anymore at all.

I appreciate her school so much, for taking the time to think about the underlying issues in my children’s lives, and not just dismissing them. Knowing where behaviours come from is SO important. The kids are grieving and struggling in their own ways, and I can be confident sending them to school, that their teachers are caring for them so well, considering their extra needs, and being soft and gracious with them.

Hopefully being back in the routine of the school day helps her heart.

Get it? No? Thats ok, it doesn’t make sense, anyway. What I’m trying to say is that today is the day before the forecasted spring blizzard. Can’t wait for that 🙄

However, because of that impending doom vibe, just about everyone around here is spending time outside! All through town, and all along Spadina in the city, people are walking their dogs, playing with their kids, running, riding bikes, and just generally soaking up the sun.

I mention Spadina, because we, too, were outside today. Its an outing I can’t talk much about. Maybe you can guess, or maybe not, and either way is ok. I don’t have many pictures I can show you, either. I have a couple, though.

We were close-ish to Kinsmen Park. It was SO warm out. The kids played, and we had some Wendy’s at a nearby picnic table. We chatted with some people and made some new friends. The kids found lone bike tires and ripped around the paths, rolling them. We sunbathed and rested.

Good weather. Good food. Good company. The BEST company.

But again, I can’t really talk about it…

I have a whole pre-written blog about things we’ve laughed about since Brady’s surgery, but its a little dark and I’m not sure everyone would appreciate it 😬 So while I hesitate on that one, I’ll share one funny Brady and I belly laughed about yesterday. It may have been a “you had to be there” moment, but it was such a good laugh that we really, really enjoyed.

Quick background. When Brady was home from work, whether during covid or on a weekend, we would get up a little early, he’d go make us coffee, and we’d have a little coffee date in the morning before the kids got up. Since he’s been at the hospital, we get up and FaceTime before I get the kids up. Its nice. I really miss our in-person morning coffee dates 💔

Brady and I were talking about that last night before bed, and he said, kind of matter of factly, that he’s sorry he won’t be able to bring us morning coffee anymore. Stairs not only take lots of concentration, but definitely both hands. But before I reassured him that I would obviously, HAPPILY bring our coffees upstairs, I pointed out that we have travel mugs for a reason! He laughed pretty hard. No bad feelings there, I promise. He countered my joke by saying I was right, and that he would just put on his backpack and go crutch it downstairs to get some coffee.

The mental picture grew from there. Brady, in his gitch, with his backpack on, and maybe his ankle brace and a good grippy pair of shoes, ambling down to the dining room to make us some coffee.

It. Was. SO. FUNNY.

Maybe just to us, but it felt like a laugh we really needed. I’ve tried not to make too many dark jokes on here, because I don’t want anyone to think we’re taking this stuff lightly. We’re not. Not at all. But if you have been through any kind of crisis or grief, you know sometimes the only thing that keeps you from bawling day in and day out is laughing.

So, we laughed. And it was awesome.

Final conclusion: We will keep a coffee maker in our room. Boom.

I had a nice morning with Brady. Good PT. Good conversation. Good closeness. It was exactly as it should be.

But then I had to go home, and leave him there. And friends, that is getting wearing. For both of us.

Remember February? February was the most overwhelming month of our lives. In a matter of days, we found out Brady had a tumour, needed major surgery, had major surgery, lost use of his legs, and was diagnosed with cancer. It was a complete whirlwind. I wish there was a word that described it better, but all I can think of is that its been an emotional shit storm, and I don’t want to say that around the kids. So, a whirlwind we shall call it. February felt completely out of control. We were completely out of our comfort zones!!

Did you know its March? In fact, March is almost over?? We’ve been at this for almost TWO MONTHS!!!

Today felt like a weary day, and I think a big part of that us the length of time being apart from one another. We have worked hard to keep our heads up and stay positive. Brady has been the best sport about being at the hospital, and the inconveniences that go along with us. We have both been SO grateful, and remain that way. But I can tell its starting to wear us out just a little more than before.

If you are the praying type, please pray for our emotional and mental stability in this way. The road is long, and while there is change within our view, its not over, but simply a turn to the next stretch of the road.

I love medical terminology. I want to know it all. While that is an unreachable goal, I learn a lot along the way, and the world of spinal cord injury is no different. So I’m going to teach you one.

Clonus.

Also know (by Brady and I) as the cloney.

Clonus is a neurological condition that causes involuntary muscle spasms/contractions. Its pretty common along the lines of spinal cord injuries, because lots of those neurological signals are mixed up.

Brady’s clonus showed up in the months before his surgery. It would happen during his physio treatments regularly, and sometimes just in daily life, but we didn’t know what it was. He just called it a leg spasms and moved on. Now its a lot more prominent. And SO bad when his legs tire. Thankfully, it doesn’t hurt him or worsen anything. But its a considerable annoyance.

When Brady’s right foot gets bumped, it starts jumping. His toes stay down and his heel pops up and down quickly, rhythmically, over and over. In order to stop it, Brady can either press his foot down for a few seconds, or he can just lift it up and relieve the pressure. The second way sounds more comfortable, but at least half the time, setting his foot back down starts it all up again. Plus, he literally has to lift his leg with his his arms. So more often than not, he just presses down on his knee until his foot stops jumping.

When Brady wheels outside, or anywhere that isn’t perfectly smooth, his foot just jumps and jumps and jumps. With that, any hope of carrying anything on his lap, ever, is lost. Papers fall. His phone falls. And then he has to try and retrieve them from his chair. Really, its just a pain.

Brady started a medication that sometimes helps those things, but at this point, his body hasn’t responded particularly well to it, so he’s less keen to keep taking it. Wearing his ankle brace helps a lot, but his foot goes a little bananas when he takes it off, as you’d expect.

I’m not entirely sure why I’m telling you all about clonus, but 🤷‍♀️ the more you know, I guess!

Say it with me, friends. Clonus. 🦶

If you remember my crazy hand and arm pain from early last year, you may remember that I learned a big lesson through that time. I learned that my body will often talk to me before my brain does. Sometimes, my brain and body disagree. My body will be unhappy, and communicating it to me, but I push myself further, because my brain tells me I can do it! Sometimes, my brain is wrong. Oof.

Since Brady’s been away, my anxiety has manifested itself largely in the way of bad heartburn. It sounds like a small thing, but I swear, when its at its worst, I cannot stand up. Its completely incapacitating. As I’ve said previously, I’m on medications for it and its at bay, but its not gone. Its just managed. About a month ago, on a day where I wasn’t expecting to go see Brady, plans changed, and I could go see him after all! I was SO excited!! And in that moment, my heartburn flared BAD. It was SO confusing, because I was so excited, and so happy, but my body’s response was to completely tie up in knots. It was SO maddening. I think that was the point where I called my doctor for help.

Things have been managed well since I started a prescription or two, until Monday. I felt a little overtired, and woke up with big heartburn. It had been a long time since I’d had any, and I had laid off some of my extra meds a week or two ago already. I took my meds that morning, but of course, I knew it wouldn’t just catch up immediately. But it helped me back to a point of functioning, and I got up for the day.

I went to see Brady that day, and all went well. I was almost dozing off, though, so I called it a little earlier than usual and went home. My mom greeted me, and almost immediately offered for me to go up to bed for a rest. I felt so crummy and tired, and took her up on it.

I dozed off during a YouTube video. For sure less than twenty minutes. And I woke up in the middle of my first ever anxiety attack. I was shivering uncontrollably, despite the heating pad I was snuggling with. My heart felt fast, and I couldn’t stop moving my legs. I almost want to say I was writhing? I couldn’t come down from it. I took deep breaths and worked hard to calm myself, but I was SO cold and SO shivery, and because of that, all my muscles were tensed up tight, and I was in pain. I called for my mom and she came up to help me. She was very concerned, as you can expect. I asked if she could start a bath for me. She didn’t love the idea of me being unstable in a bathtub, but I took my phone with me so I could call for help, and she said she’d come check in from time to time. She stayed in the room until the bath was fully run and I was settled.

The bath turned out to be the right move, and my body finally relaxed.

I spent most of the remainder of the day in bed. I was beyond exhausted. My tolerance was low. My head hurt so bad. I was miserable. I was SO frustrated with my body. How dare it want to recharge at such a time as this – when my husband is in the hospital and my children need me more than ever?? I praise the Lord for my small circle of people who have been able to actively help in my home – mom and Cher, and for my much larger circle of support outside my home, which consists of SO many of you, and your friends, and their friends.

I cannot afford to burn out, but its clear my body wanted me to take a step back from the day, at least. I’m trying to find that smooth middle ground between getting rest, but also pushing myself to accomplish tasks that genuinely need accomplishing. How can I trust my drive and motivation? My body will be tired, but how much is too much? I wish my brain and body would cooperate with each other. Live in harmony already 🙄

Okay so, this could start off a little heavy (oh hey, Cher again) I am not sure if any of you know, but three years ago this April, my brother Scott lost his battle with depression. It was the beginning of my friendship with Hailey and I barely knew her or Brady at that time. I was just coming once a week to take pictures of her belly when she was pregnant with Waverly. 

In the meantime, I have felt like Brady was a big brother figure to me. Not JUST because I have spent lots of time with the two of them, but because I have learned a lot from him. I have watched his self-control. That alone could be its own series. Five kids crying, two need diaper changes, someone is at the door visiting with Hailey, food on the stove.. And the guy just stays so calm and casual. I sit there in disbelief.. Waiting for an explosion that NEVER comes.

I remember one time we were talking about coffee and creamer and for some reason he came downstairs and apologized to me because he felt that he was seeming protective of the amount of creamer being used (even though I drink black) in case he may have hurt my feelings. Like…. Wha.. who… whe…huh??

Fast Forward to… currently. I am sort of a nerd and I have watched every single episode of the flash… twice. Now that Brady has time to watch anything he so desires, he is watching the Flash. I get little updates everyday of silly things, plot twists, character flaws etc. and man.. I am not HAPPY he is in the hospital, but I remember messaging my brother for years trying to have more than one word answers. And to have a brother now who messages me first about nothing more than twizzlers in a nerds pocket. That’s like an answer to prayer. (To clarify, this is ALL in a group chat where Hailey can read but like she doesn’t because we are too busy being nerdy. It’s fine)

Brady is a really good example for me because he goes against every “normal” family where the husband just does his OWN thing. He is THERE for his amazing wife every evening. That doesn’t mean he has no hobbies or friends. He does! But he also takes pride in his family and his commitments. He is THERE for his kids and even knows what size pants they all wear.

For someone who grew up with a drug addicted father and losing their brother, having a positive big brother figure has been nothing but educational and rewarding for me. We have had moments of civil confrontation and healing. Moments where clarification is needed. Moments where I’m wrong. Moments where we are all wrong. And at the end of the day, my best friend’s husband shows up and proves to me that men know how to care.

Thank you for listening to my Ted Talk series, I put out new content every time I ask to give Hailey a break.

I was asked to write a blog post today from my perspective of Rowan’s melatonin experience. (Yes, it’s Cher, how did you guess? :P) 

I am excited to write this post because I feel such a burden for beautiful Rowan. I hope one day when he is an adult he reads these and sees how loved he is. Not judged, or criticized.. But genuinely loved. We all want to connect to him and understand him.

For myself, I feel like I am a lot like Rowan. I feel deeply and quickly. Although I am an adult now, I still find myself needing magnesium to help with my hormones and ADHD symptoms. I personally don’t believe that Rowan has ADHD or any other type of disorder, but I do feel that he could just have a chemical imbalance. 

Going back to December:

I was there when we decided to call the pharmacy. Hailey and Brady tried everything for years to help him organically. Finally, I interfered one day and said: “Let me just research this and call someone.” and to my surprise, Hailey and Brady welcomed the help. It is never a sign of weakness to accept help.

On Brady’s way home, he picked up some melatonin for Rowan. At this point, Rowan was having fits of rage multiple times an hour. All day, every day. It came to a point where he said he could not try anymore. We all knew that something had to be done. I think as an outsider it’s easier to push because he isn’t my kid. Hailey’s fear was the judgment from others that they would view this help as a negative way to “shut him up” and that simply was and is never the case. Rowan had love with or without melatonin. It did not make anyone love him more.

The first few weeks were amazing. Almost no freak outs. Then, he kind of got used to it. He became just as angry as ever. Hailey was beside herself. What else could she do?? She began to REALLY take into account what everyone was telling her about their kids. She couldn’t stand for him suffering anymore. It was never about HER. It was and is ALWAYS about him. What parent wants to watch their child suffer? The fear for his future was real. Will he lose friends? Will he get kicked out of things? What is ahead for Rowan? No one will see him for who he really is. He is soft, gentle, careful, thoughtful, spiritual, and absolutely special. They are more afraid of you judging him, than judging them. 

Fast forward to March: They kept Rowan on melatonin. I think this is very wise. Especially with Brady in the hospital. Hailey needs sleep. Rowan needs sleep. Everyone needs sleep. Now that Rowan is on the melatonin and magnesium combo, it’s like the clouds have cleared, and you can see his true spirit.

Just last week I busted him for lying to me. I was afraid because I had Hailey upstairs to rest and didn’t want her to hear her son scream. I told him that he gets his toy back when he apologizes. He looked at me disappointed, walked to the front room and sat down. Then he went downstairs. Later on he came upstairs and apologized and got his toy back.

On any other day, without the help of these natural vitamins, he would have thrown himself on the floor, screamed, slammed his door and it would be a 45 minute episode. 

On St. Patrick’s Day, he came home with a Leprechaun trap and played in the kitchen with it for a while, increasingly getting more rowdy with implementing new toys. I politely asked him to not use anything that would fall and break. He replied: *sigh* “okay”  which is night and day from absolute yelling right off the bat. He can listen now. Not only hear, but LISTEN. Of course we still want him to have his same personality, and of course he still has it. We want him to feel things and work through his emotions. We want him to learn and grow and mature. No one wants a zombie child, or to be the parent who shuts their kids up with medication. 

I can’t express enough, as someone who doesn’t have kids, how afraid I am sometimes to enter the world of motherhood. All the judgments and fears. I watch Hailey many times a month, worry about what people will say or think. Not because she is weak, but because she doesn’t have the time for feeling judged for how she raises her kids. 

When I have kids, I hope I can be just as incredible a mom as Hailey is, and that I have just as supportive of husband and father as Brady is. What a team. If we had ALL parents take this kind of time, care and concern as these two do, there would be way less adults in the world who feel neglected and confused about themselves. 

Thank you for listening to my Ted Talk.

Ok, so I know you’re not all parents of young children, but bear with me. This was a super cool discovery on my kids’ part and I want to share it with those of you who do have kids who play with Magformers.

Maybe this is old news, but maybe it isn’t.

When we had the basement drywalled, we requested steel corner beads to ensure they’d last a little longer and not get beat up too too fast. Those outside corners get hit hard. Thank goodness we did that, because clearly someone was whipping magformers around the basement and one caught on the wall. It grew from there, with a line of the squares going up as high as it could. But they took it to a whole new level today!!!

This is SO fun, and I never would’ve thought of the corner beads as a magnetic surface. I’m not kidding. Give it a try.

Brady has been incredibly active in his rehabilitation, clobbering every obstacle that has been placed in front of him. He has walked smoother and smoother. Used a walker and crutches. Learned the ropes of using a wheelchair. He’s learned balance and strength in terms of swaying and side stepping, which might sound small to us walking folk, but we have NO IDEA the difference between walking forward and walking side to side. It is NOT the same. Brady has excelled, and had made strides that even his very optimistic rehab team knew were a stretch.

Brady’s student PT was finished on Friday. He had told Brady a while back that he was hoping to get Brady on forearm crutches on his last day. The big finish for his stretch at City Hospital. Except, they did that much earlier this week. Tuesday, I believe. So, on Friday, there was a new plan. Stairs!

It doesn’t take a genius to figure out that stairs are kind of challenge for people with limited mobility. If you didn’t already know our house was a modified bi-level, now you see why its pretty important that Brady be able to climb stairs. Yes, we will get a lift up to the main level of our house. But there are other staircases, and those are important, too. They lead to the basement, as well as up to our master bedroom. We cannot swing the cost of three stair lifts. So, it was time to try.

First, Brady and his therapist went between the parallel bars, and Brady used them while he stepped up on a shorty little stepper stool. It was a very specific series of movements. Good leg first. Step up. Right leg next. Don’t lift with your hip. Use the muscle on the side of your butt, and your thigh. Then lock that knee. Boom! He’s up. Down was similar, but in reverse. Right leg first. Lock the knee. Follow with the strong leg. Brady would step up, and then over it, and his therapist would drag it back out in front of him for another step. After two completed lengths of the parallel bars, we moved to the real deal.

And as you can probably predict by now, he crushed them. He went up and down this practice staircase twice, I believe. He even practiced it once on his bum, scooting up and down that way. And it worked!! Once Brady was done with stairs for the day, they worked a bit more on getting up into his chair from the floor, which is a decent effort, but he can safely, confidently make it happen. All of that together opens SO MANY DOORS!!!

This means we can throw out our plan to move our children around and move our master bedroom down onto the main level. Rather, we can install a second railing in that stairwell and he can get up there with a study railing on each side! He will let down SO much nicer in his own room! Same story with the basement stairs. We will get funding for a lift onto our main floor, as its our longest staircase, and way too wide to use two railings at once. We have options now. Realistic ones. Options that make it seem like some things can be normal again.

I am SO proud of Brady!!!