Encouraging Words

The amount of messages we’ve received in the past five weeks or so has been unlike anything we’ve ever experienced. I have permission to share one from this morning, so here you have it. This is what I woke up to.

From Cher:

Good morning, to my WOMAN CRUSH WEDNESDAY OOO LALA.

woman crush er’ day. Pff. Chh.

I love you so much, beautiful sweet Hailey! How did you sleep??

I love spending time with you. And being silly with you!

I love seeing you happy. Even if it’s because of food.

I love your hobbies and all the things you do that make you happy.

I think you’re so brave, even when you make dark jokes.

I love that we can still snug sometimes.

Even if you fall asleep

Things are gonna get better soon I promise

Things are gonna feel normal before you know it

You will look back on this as just a time. A difficult road. But one that shaped your perspective and strengthened your family.

And your view will never look better.

I Hope For Peace

I hope one day, I feel the peace a young sleeping child has.

That cozy, problem-free rest. The simplicity. The abandon.

I know I can find peace in God. I’m trying. I’m praying. We ache for healing, health, togetherness, and a resolution to all the uncertainty.

Philippians 4:5-7:

Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Melatonin Monday: Part Eleven

I am really happy to report that Rowan continues to grow and progress towards an easier life and a calmer attitude. Every night, I pray with him and we ask Jesus that Rowan will be unscathed in this time of uncertainty. And as far as I can tell, God continues to provide.

Rowan still definitely gets sad. We all do, am I right? But his control is unbelievable! He is SO much more level than he was even a month ago, and considering everything our family has gone through, he would have every reasonable right to be in far worse shape than he was to begin with. I am SO incredibly proud of him!

Just a couple of days ago, he hurt himself by dropping his water bottle right on his toe. That hurts. I know. I’ve done it. He shrieked in pain, and then cried. Not long ago, he would’ve screamed and tantrummed and just gotten SO angry. But he didn’t. I held him and tried to be super understanding about his pain. He cried for a pretty good while, I could tell he was having a hard time winding down, but he never got SO frustrated that he just threw a fit. When he finally started to relax a little, he told me he was sorry he had screamed, and that he tries SO HARD to be a good boy, and that he doesn’t want to make me feel hurt or sad. I hugged him SO tight and reassured him that I was NOT upset that he had cried when he got hurt. I told him I WANTED to know those kinds of things! But I heard his heart, and I told him that, too. I see how hard he is trying, and I let him know it was SO worth it. He said to me “Ok, good. I’ll keep working.”

The journey continues, and I’m so thankful for be along for the ride. I am SO pleased with Rowan’s continued progress and growth!

Spring Helps

I know. I know where I live, and that Spring isn’t actually impending yet. It’s all a lie. There is still more snow to come, I’m confident. But the current facade of spring feels SO good, even though I know it’s fleeting.

The grass we seeded last fall has surfaced as the snow has melted off the front yard.

I have been able to walk from the car to the hospital in a sweater.

We had iced capps the other day.

I dug out spring jackets, splash pants, and rubber boots yesterday. Our loving neighbours filled in the gaps and purchased boots and pants for our kids who didn’t have any that fit.

Tom got the kids bikes adjusted, oiled, and filled for the season. Kids are ripping up and down the street as I type this.

The sun is up earlier and lasts later into the evening. The days are longer.

Vitamin D.

Warn weather means lake season is coming.

Warm weather means lake season is coming.

Warm weather means lake season is coming…

Hanging at the Hospital with Brady

I’ve been able to spend a bit longer lengths at the hospital in the last few days, and Brady and I have really enjoyed our time together. When we have enough time, we like to play cards. It is a nice way to do something different, mix it up while we visit, and honestly, its a solid distraction from all the scary crap.

We play a lot of SkipBo, because it doesn’t require a ton of thinking, so its easy to play while we visit. Also, it doesn’t take up a ton of space so we can play it on the little hospital table that goes over the bed. Its a good setup!

The other day, we played a game with twenty cards in the pile. I crushed him in that round, and when I won, he still had fourteen cards left. As we tend to do, he flipped them to see what he had, and whether it was hopeful or not.

It was not.

Probably the worst pile of cards I’ve ever seen! He had no chance!

I realize as I write this that, if you don’t know how to play SkipBo, this means nothing to you. So if nothing else, enjoy Brady’s gorgeous smile and the light moment we shared.

Pandemaversary

This is Cher writing today!

One whole year since this pandemic hit us. I will never forget my very last day in University. I was a little oblivious to what was going on that week. I would take the city bus to school from Lawson Heights Mall and I would see people with masks on. I thought that was just extreme and weird. Little did I know, I was days away from never returning to school again for the rest of the year.

My last class I attended on campus was an English class. One of the girls I sat beside went to talk to the prof after class, and as I was leaving I remember hearing them talking about virtual learning. I thought that was something SO extreme that could never happen. I went home to Dalmeny after that and saw Hailey off to her weekend retreat. Hours later I got an email saying that classes were ALL online. The next week they were cancelled, but they picked up in a virtual setting that was new and strange.

In the last year I have learned a lot about my abilities when it comes to learning at home. I need changes of scenery. It’s hard for me to learn in the same place as noisy dogs, but I can roll with it when I have to, for sure. It’s been such a blessing to have the time I had to study at the Born’s. They have been so generous and supportive of me, and I don’t know how well I would have done without them. I would hide away for days and not have to worry about cooking. I didn’t have to show my face, I would just sit in my room, read, study, nap, repeat.

I DESPERATELY miss being on campus. I have grief that I don’t get to meet new people and learn in person. Grief that I waited SO long to finally even go to University, and I am spending such a HUGE chunk of it at home, instead of being harassed in the tunnels to buy things I don’t need and sign up for things I don’t want. I miss the busyness, the smells, the noise. I miss the SUPER cranky Tim Horton’s employees, and paying for parking when the bus didn’t show up on time. I miss getting an iced coffee and walking outside in the bowl. I miss the good, the bad, and everything in between.

I really hope this pandemic lightens up soon! I have a new perspective to try out!

Coffee Therapy and Therapy Therapy

Today started pretty cute. Wavy had a “Flock of Seagulls” look going on.

Once the kids were off to school, I gathered up my items to bring to Brady – today it was snacks, underwear, and some pictures – and I got on the road. I picked up coffee along the way, as I try to do most days. It was especially friendly at Starbucks today. The drive-thru on Idylwyld has become a regular stop for me. I like them there.

I was waved through my security, and the screening people greeted me with “Oh, thats Hailey. She’s always here.”

I beat Brady to his room, but only by a few minutes. He was all sweaty from his time in the gym, but he was happy, as he tends to be after a good session.

We enjoyed a quick coffee date before getting to his hour of physical therapy. Today Brady worked on trying to safely get onto the floor, and back up to wherever he came from, such as his wheelchair, a couch, or even a fall. Praise the Lord for that arm strength, as it is a HUGE asset in terms of getting him back up when his legs aren’t as stable as they used to be. We tried to simulate the height of the van, and how high up the seat might be, and how he might get into it. It was hard to stage, but I’ll bring the van to the hospital next week so we can actually try it out in person! We’ll know shortly thereafter whether or not he needs any modifications/pull bars/latches, etc. He closed off his physical therapy with some walks back and forth between the parallel bars. The four of us had some good laughs together, and we even got one of them to snort, twice. It was a good therapy session. It felt productive and positive. As we left, we ran into one of the spinal doctors on the ward, and she inquired how Brady’s therapy had gone. He was really optimistic, and that made her really happy.

I went back to Brady’s room with him and hung out with him while he ate lunch and I drank my Boost. Then I headed out from there, so he could meet his 1:00pm appointment and I could get home, and get my van to our mechanic before it closed. Of ALL TIMES for the brakes to grind 🤦‍♀️ why wouldn’t it be now?

I came home shortly before 3:00 to a care package on my doorstep.

I don’t know who you are, but I am so grateful! So many good treats! I have lost count of the amount of times I’ve come home to gifts on my doorstep. I am overwhelmed with gratitude. I hope that is never in question.

What a nice day. Thank you, Lord.

Brady’s Surgery: In the Last Month

One month ago, Brady was in surgery. A surgery that we felt as prepared for as we possibly could. A surgery that COMPLETELY rocked our world.

In the last month, we have learned and grown and changed and struggled and celebrated and gagged and barfed and laughed and wept. It has been a whirlwind. The whirlwind. A monsoon, perhaps. Something we never ever would’ve ever thought would happen to us. This kind of thing happens to other people. People you just hear about, even. Not really people you know. Or yourselves. It has been the definition of surreal.

In the last month, we have learned an amazing amount about spinal cord injury, and the neurological side of medicine. We’ve learned about tumours, different kinds, all kinds of big words, all kinds of acronyms, all kinds of medicines. We have learned a TON about the world of rehabilitation, in terms of stretches, exercises, muscles, nerves, and equipment. Braces, AFOs, harnesses, bands, and belts. Bikes, weights, sit/stands, parallel bars, the list goes on. FES in all forms. There has been SO much to absorb.

In the last month, we have learned about accessibility, in terms of what to rent, what to buy, what to apply for, what to adapt or modify, what is covered, and what isn’t. Lifts, ramps, bars, poles. Temporary or permanent. We’ve discovered OSC Abilities and Sask Abilities.

In the last month, we have learned about wheelchairs! A LOT about wheelchairs! Different kinds of wheels, frames, seats, backrests, and armrests.

In the last month, Brady has gained a neurologist, a neurosurgeon, a spinal surgeon on the ward, a resident spinal doctor, a social worker, two physical therapists, an occupational therapist and an assistant occupational therapist, a recreational therapist, a radiation oncologist, and a systemic oncologist. We also have a closer relationship to our family doctor than ever before.

In the last month, we have learned more about programs available to Brady now. Paraprogram. Kinsmen. He qualifies for different grants and benefits now. Ha! “Benefits.” Applications are in full swing for just about everything you can think of. I am in active contact with someone regarding accessibility, and trying to plan ahead without looking too far ahead.

In the last month, I have learned the ways of two hospitals. I go through City Hospital like I live there. Its so familiar and normal now. The security guards and screening people know me. They know Brady’s ward. Not quite his room number yet, but its coming. Greet. Screen. No changes. Sanitize. Take mask off. Sanitize. Fresh mask. Have a good day.

In the last month, our community has shown up. Never would I have EVER expected the support we’ve received. I am in a state of overwhelm when I look at my list of thank-yous, knowing I will never be able to thank everyone appropriately. I hardly know how to talk to people when they come to my house, because “thank you” doesn’t feel sufficient, but I have very little else to offer. We have been flooded with food, cards, finances, gifts, offers, and prayers. The gofundme and e-transfers have carried us with Brady being off work and our life complicating the way it has. I drive to the hospital in a car that isn’t mine that someone else filled with fuel. I pick up coffee, paying with a gift card, and park in the hospital parkade with my parking pass that someone purchased for me. Supper is ALWAYS brought/made for us, and I have help with my children every single day. My house is cleaned, and my laundry is done. We are covered, and it is INCREDIBLE. I do not know how we would stay standing if not for our community. Where did you all come from?? What did we do to deserve your support?!

In the last month, I have been apart from my husband for at least 21 hours per day. I have slept without him for an entire month. And he has slept without me for an entire month. We miss each other terribly. I know every couple does things differently, but he and I are a tight knit pair, and it is incredibly hard to be apart this long. Our children grieve their father not being home. Not always outwardly, but sometimes, and in lots of other ways. Just this morning, I opened a bedroom door and a child popped up with an enthusiastic “Is daddy home??” It was a definite punch in the gut.

In the last month, absolutely everything has changed. Our family life. Our life at home. Our life at the lake. Our recreation. Our security. Our dependance. Our abilities.

In the last month, we have lost a lot. But we have kept our faith, which is above all else the most important thing.

One month down.

Brady’s Situation and Hailey’s Anxiety

You’ve probably picked up on it, but it’s a pretty overwhelming time over here. Tumour. Surgery. Paraplegia. Separation. Cancer. The works. My anxiety has taken an enormous hit, but now that I’m a bit more on top of it, I feel like I can talk about it, at least a little bit. 

I made the choice to go up on my antidepressant. Its necessary, as this is a long game situation and I’m not coping as well as I’d like to be. While we wait for my body to catch up on my new dose, I have a few other helpful things in place. 

Sleep is a gigantic struggle on the regular, so thats maximized tenfold now. I’m on something temporarily to help with that, and its really a relief to actually stay asleep and wake up feeling rested. 

My biggest issue has been digestive. Since right around Brady’s MRIs, I’ve had the most unreal heartburn I’ve ever experienced. NEVER before have I felt SO on fire in my chest, to a point where I literally couldn’t stand up straight. It would come in waves, and I would be somewhat incapacitated. Absolutely nothing would touch it. This was obviously tied to the fact that I could hardly stomach food anymore. I would gag and dry heave if I tried to eat, or heaven forbid, prepare food. Thank you Lord for the meal train that has kept our family fed! But I was losing weight. I promised my people I would call my doctor if I dipped below a certain number. And I have. So I did. To combat this struggle, I am on a prescription antacid, a strong anti-nauseant, and I’ve delved into the world of meal replacement drinks. Don’t come for me on this. I know they’re not the ideal long term solution but they’re a fantastic short term solution, and I am SO grateful they exist. Since I’ve started having one in bed before its even time to get up, I’ve had WAY less heartburn and I’m functioning SO much better! My body is clearly happy to have something to digest besides itself.

Once my antidepressant catches up a little, I imagine I won’t be as gaggy and I’ll be able to eat, which will relieve a lot of the digestive issues. As well, I hope I’ll be able to feel a bit of mental relief and I should sleep better, too. 

None of this is about me. Trust me, I know. But I have to keep the rest of our life functioning and that was proving a lot easier said than done. So, here we are, finding ways to make it work. 

Lord, take care of us all.

Brady’s Pathology

The long awaited pathology has arrived. Sort of. I’ll get into it in a minute here. First of all, I want to say we received it last week and have been sitting on it, processing for a few days. We feel ready to talk about it. Somewhat ready, anyway, whatever that means. We haven’t been ready for any of this. And there is definitely still more to come. 

Bradys tumour was originally diagnosed as an ependymoma. He has been upgraded to (ready?) an Anaplastic Pilocytic Astrocytoma. Boom. We were told there are two kinds of tumours that grow in the spinal cord. The ependymoma is the better of the two evils. And Brady has the astrocytoma. It was about 2” tall, which is actually huge for where it was, on his spinal cord. 

As things go sometimes, Brady’s tumour is super rare. Even after digging into it, there are a lot of unanswered questioned. Enough uncertainty to warrant the tumour being shipped off to another doctor in San Fransisco for molecular and genetic studies and further consultation. We’re all a little jealous that the tumour gets to go to California and we don’t. 😒😎

So. The biggest questions answered. Yes, the tumour is cancerous. We were aware all along that it “probably” was cancerous. While Brady was still in surgery, the tissue was put through an initial test, and it was stated that cancer cells were visible. So we’ve been waiting for the stage. Stage one is obviously optimal, if you could call any stage of cancer “optimal.” The pathology talked of stages one, two and three. It would appear the tumour was a little wishy washy, as Dr. Guselle said, and there are different stages of cancer in different parts of the tissue. There is NO mention of stage four, though, which is a relief. Two and three still aren’t great, but we’re celebrating small victories over here. 

The pathology notes “The patient is successfully going through post-operative rehabilitation, having not lost all spinal cord function to become paraplegic. This is despite the size of the tumour and the amount of tumour resected. Thus, preservation of spinal cord function is a major factor in considering treatment.” Take from that what you will, but in it, I read HOPE! Not only because they’re noting that there is function, and that he is successfully going through rehab, but also consider the fact that this is noted in the pathology. The part about Brady’s recovery has nothing to do with the results of the tumour they resected. But they’re watching him. And that is pretty exciting. As Brady defies odds, we are praising the Lord for the progress he is making. God is giving him the strength, and optimism, and drive. All the tools. And Brady is using them, working HARD for change. 

With Brady’s pathology finally in order, we can look a little further ahead. There will be rehabilitation, and then radiation. Possibly other treatments. Brady already has two appointments (over the phone and video chat) booked with cancer doctors this month to make decisions and plans for what comes next, where, and when. I don’t know what the answers will be, but I’m pretty sure we’re on a very long road.