Today, Brady and I got to walk together, just the two of us. I wish I had pictures, but I was trying to be very concentrated on him and his steps, so that’ll have to come down the road. For now, we’re just enjoying our relaxed walk through the rehab ward. He is getting SO smooth on his forearm crutches, its crazy! With a well fitted AFO and a strong pair of shoes, plus his growing confidence and stability, he is well on his way to going for walks without any assistance. I am SO proud of his immense progress!!
Together, we walked from his room to each end of his chunk of the rehab ward three times in one walk. Three full laps of the hallway. The furthest he’s ever walked in one walk! He showed me the sunroom at one end of the hall, with couches and flowers and movies. Seriously though, don’t stand too close to the windows. You do NOT want to fall into those plants!
Once his body was tired enough, we headed back to his room and played some skipbo. I destroyed him for a couple of rounds, and then he crushed (crutched) me a couple of times. It was a really really nice way to spend time together.
We had such a nice time, but then I realized I couldn’t count and I had been at the hospital considerably longer than I thought I had. So I packed it up and headed on out. It was sad to leave. Today felt like SUCH a nice visit, I wish I could’ve stayed and stayed. But I’m grateful for the time I do get, and that its possible for me to go just about every day.
I am SO proud of Brady, and the amazing strides he is making!! As we hone in on his projected discharge day, we pray God’s covering over him. Please feel free to do the same.
We had a very nice outing this morning. Its another one of those outings I can’t talk about in too much detail on here, but I am HAPPY to share more privately 🙂 If you haven’t caught my drift about whats all going on, please just message me. I have to be careful. And I can only share a fraction of the pictures I took. Just take my word for it that it was a really beautiful couple of hours back at that playground just behind Kinsmen.
“Look at me! I’m Daddy!”
Laela found some crutches at the park.
Meanwhile, the bike tires they were rolling around last week were still there, and Rowan decided they were a wheelchair! It was actually really fun to see them pretending that way, without any hangups or discomfort. Just accepting of the new norm.
There was a moment where Solly fell, kind of, but not really, and wanted to have a really big cry about it. Laela is working hard to be a caregiver, and right away went to him and tried to bring him to me. It didn’t work out. Or it did 😆 It was a little funny.
I loved her effort, and I secretly enjoyed the dynamic when he fell and she got upset with him. It was solid 👌
Aaaaand the last picture I have from today is just of Wavy being beautiful, as she does, so effortlessly.
She was doing all kinds of daredevil things today, no fear whatsoever. Is it ok that I’m scared of her fearlessness? Because I absolutely am.
The weather cooperated beautifully, and everyone really enjoyed their time outside and our new special park. We made friends last week who even showed up again today, and the kids all got to play with some familiar faces.
Everyone is home now, nice and tired, my mom and I included! Whew! Those outings sure take it out of you, but they are SO worth it.
Today was an exciting day 🙂 I’ve been looking forward to it since last week when it was still waiting for official approval. When approval went through, we confirmed schedules, and all was set.
This morning, I was cleared to be Brady’s “assistance” when he’s on crutches, and transferring to and from the van. His physical therapist watched him do a few things, and advised me how she would brace him in what setting, all the while saying “less is more,” saying that Brady is so stable and capable, and its more about being on than hands on, if that makes sense.
Today, I got to take Brady out! JUST THE TWO OF US!!!
Going out meant Brady getting in and out of the van, using his crutches and chair out and about, without his physical therapist. It also meant me getting acquainted with his wheelchair, taking it apart and reassembled properly. I assume that’ll get quicker and easier and more fluid as time goes on, but it wasn’t complicated, so I already feel pretty comfortable with that.
Brady has been wearing shoes from the rehab ward this entire time, as they’ve been sending his AFO (ankle brace) back and forth to Saskabilities for tweaks and modifications. Now that its almost exactly how they want it, we booked a field trip to Brainsport to get Brady some shoes that are actually his, that fit how they should, that he likes. We went in with some ideas, with plans to buy two pairs with the gift card someone anonymously gifted us earlier on. One pair that he was hoping for fit perfectly, and they offered to ordered them for him in the color he preferred. The other pair he had his eye on was a bit of a bust because they didn’t come in wide. So, while it wasn’t his very first choice, we left Brainsport with a pair of shoes that fit beautifully, but aren’t his favorite style. Still, they are SO stable, and he is truly happy with this choice.
When we got back to the van, we just happened to notice the early time, and a Subway directly beside Brainsport. So we decided to take gentle advantage of our time away, and we grabbed some subs and went to eat them by the river. It was SO calm and nice out. I think it did Brady good to just smell the fresh air.
It felt like a day of accomplishments! Now, Brady and I can go for walks together over the long, long weekend, and practice walking with crutches without a therapist or a nurse. It frees him up in a lot of ways, and brings him closer to being able to walk with his crutches unassisted! Thats the direction he’s moving in, and he is excited about it.
Another milestone from today has left me with a mix of emotions. At first, it was a little comical, but then I cried on the drive home about it, so there’s that.
While we were at Brainsport, the man helping us was grabbing a size of a shoe, and other employees were helping other customers. Suddenly, someone was right next to us. All they said was “What the hell, guys?” And as you know, in masks, its harder to recognize people immediately. But it came within just a few seconds. It was our chiropractor. Dr. Mike. And we haven’t seen him in a LONG time. It was the first time we ran into someone who knows us pretty well, but has no knowledge of whats been happening. He just stood beside us, eyes wide with genuine concern. he finally uttered “Whats going on?!” Brady kind of chuckled and told him he had a spinal tumor removed in February. Dr. Mike asked the height of injury. T7-T11. They had a very brief discussion of details. But then his salesman resurfaced, as did ours, and we got back to our fittings. We ended up leaving before he did. As we walked past him, he just looked at us and offered up a feeble “Good luck, guys. I hope you’re ok.” I thanked him and we kept walking. I looked back a couple of seconds later, and he was completely slumped forward, shaking his head. Dr. Mike is a very upbeat, boisterous guy. I have never seen him so solemn. That felt like a shakedown. It was a first, and it won’t be the last time, either. Thats going to be a hard part of all of this, I think. More for Brady, of course, but we’ll all feel it.
Today was a strong day together. I truly enjoyed our outing. We did great. Nothing was ruined or wounded. Only one really zinger moment, but we can get past that easily. Brady got shoes that he can walk so much more confidently in, and now he has more confidence and independence. It was a great day.
My mom has been staying with us for a while now, which has been such a blessing to every member of our family. She makes it possible for me to go to the hospital as often as I do. I tried to list out all the tasks she accomplishes, but there were FAR too many. Most importantly, everything she does, she does willingly, warmly, and lovingly.
Uprooting her life and taking us on isn’t necessarily an easy task. Save for the obvious – five grandchildren and one incredibly emotional child to care for. Beyond that, my mom keeps her house COLD and I do not! We’ve turned the temperature down, but she still closes her bedroom door and opens her window up in the evening to positively BLAST her room with the cold!
And then last night, it finally happened. Her window froze. Open.
Resigned, she texted me and asked me up in my room and asked if I could come help her try and close it.
I imagine it was quite a sight, my mom in her shorts and t-shirt, me in my shorty robe, trying desperately to loosen the window. We could neither close it, nor open it further. I called Brady and put him on speaker so he could be part of the chaos. He was stumped, too. All four corners were loose, so we started to worry that is was just jammed. Open. In cold weather.
Finally, we solved it. Mom had the answer.
She took her hairdryer outside with an extension cord, and blowdried the track while I reefed on the window from inside. We belly laughed the entire time, and finally, the window slid just a little. I reefed on it one more time, effectively slamming it right in my moms face, but she understood. We celebrated, and her room was freezing, just like she likes it, hahaha!
Aaaaanyway, we had a laugh. It was nice to have Brady along, too. Felt almost normal. Almost.
I cannot do extra. Plain and simple. Very little “extra” is within my grasp right now. These are trying times, and I’m working hard to stay afloat.
Months ago, I spoke to an OB about our fertility issues, and she wanted to set me up with a procedure to check my uterus and tubes out. It took months to book, but suddenly, it was on my calendar for this week. Of all things, of all times, fertility is pretty far down our list of priorities, so I called and tried to reschedule it. I said I was fine to book it way down the line. Months. Whatever. But they told me there is only one doctor in the province who does this exact procedure, and he was about to go on sabbatical. So if I wanted to reschedule, I would actually just cancel, and see what happened. And I did not want that. So I kept the appointment and accepted the reality of having to push through “extra.” And that was today.
I won’t go into crazy detail, but it was an uncomfortable appointment. I was very well cared for an encouraged by the three medical staff members in the room with me. Everything was explained along the way, and I was reassured at every step. It did turn out to be worthwhile, though, and follow up will be done! Nothing is blocked, nothing is growing, nothing scary. Information was gained, and I’m so grateful. The doctor performing the test told me he was happy I came in and we got some answers, and told me I had done really well. I apologized for flinching and struggling a little, and the room reassured me that I had been totally cooperative and everything was clear and uncomplicated. They were really loving. I felt safe.
That appointment happened when I usually am visiting Brady at the hospital. Instead of being able to go to him directly afterwards, he then had an appointment at 1:30. So today’s visit will be at an entirely different time than usual, but I still get to see him, and thats what counts!
Thank you, mom, for driving me. Thank you, friend, for keeping Solly for lunch. Thank you, Lord, for bringing the snow yesterday, not today, and making my appointment possible. And for the beginnings of answers.
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.
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!
