The Daily Hailey

Today is a peaceful day. I can’t say that every day. But I can today. Today is not a perfect day, but I feel peaceful today. So far.

No one woke me up last night. No sleepwalking. No nightmares. No interruptions. I slept through.

Laela, who is working off a punishment right now, completed her work this morning without complaining. She has not complained yet, and for that I am so grateful. Lesson landed.

Brady is working on a building project. Not only will the result be worth the work, but the fact that Brady can complete projects such as this is a beautiful confidence boost for him. He is SO happy to be able to work still, even if it looks a little different.

The three older kids are at school, and I’m down to two. Waverly and Solomon are playing outside together, seamlessly. They do so great, just the two of them together. No fighting. Just pretending together.

The sun is out, but not TOO hot. No wind. Even the weather is peaceful.

I’ve been able to crochet this morning. I have so many projects in my mind recently, and crocheting has turned into something therapeutic. It keeps my brain busy, but not overloaded, and it keeps my hands busy so I don’t get too pick-y. I’m able to be occupied without being too busy or overwhelmed. I wish I could make a living crocheting somehow, haha!

Today is the day that our dear friend shops for us, and we will receive a giant Costco haul at the end of the day. I am so relieved to not have to fit that shop into my life right now. One day I will again. But, not this week, and thats ok.

As I sit, peacefully, I fight the urge to jump up and be frightfully productive. My brain runs over the list of things I have to do. Have to pack. Have to prepare. But rather, I’m going to take deep breaths, and enjoy my peaceful time. I will be more accomplishmenty later. Maybe. Maybe not.

First – peace.

As if the title needed any clarification, I’m here to share pictures from the weekend with you! I don’t have AS many this weekend, but trust that I was just occupied with enjoying my time with my people 💜

We kicked off with honey chicken we had made the day before and warmed up once we arrived. It was delicious and went over well.

Our first night was relaxed, and was not photographed. We just hung out, got set up, and eventually got everyone to bed.

Day two was extra special because Cher came out!! She has WAY better pictures than I do, but I’ll tell you we had a lovely time with her there! I took her on a golf cart tour, and we crocheted by the fire. Brady began working on the stairs, and the kids ran all over the place, playing with friends and exploring.

Dekker found a little clearing and decided to make a fort/clubhouse out of it. Braden even helped him get a pallet in there for a floor.

I brought along some bacon wrapped steak skewers that I found in the freezer from a while ago, and Brady grilled them up. They were DELICIOUS.

Meanwhile, Rowan built cool structures out of Brady’s cutoffs.

It was SUCH a lovely day! Maybe Cher will Cher her pictures with you one of these days 😉

The next day began with a morning fire and s’mores for breakfast, which may or may not become a new tradition.

Check it out! Brady can still chop wood! On his new itty bitty little chopping block! Lol!

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Something that was awesome about this last weekend was the fires! Sometimes, the wood at our spot is really wet, and even though we try to keep some covered at our site, its just hard to get a good blazing fire. But this weekend, it was PERFECT, and we kept fires going ALL day!

Brady got some Fathers Day cards and gifts from the kids, as well as some Saxx from me. Aaaaand pep and cheds, because YUM.

The day warmed up, the fire crackled, the kids played, I crocheted, and the man napped.

I’m ready to go back. Aaaaany minute now. But I need smaller projects to crochet. Everything I’m making is too big to work on in my lap, hahaha! If thats the biggest problem I’ve got, I’m pretty fortunate. Thank you, Lord.

Short answer:
Everything.
Except those high shelves in the kitchen.
And he can’t actually get into the pantry.
But everything else!!

Long answer:
Brady can literally do just about anything he could do before. That doesn’t mean he does all of those things regularly, because some of them take WAY more concentration and energy than they did before, but he does a lot more than many people might realize. I’ve been realizing a handful of people have asked the same questions, and they’re pretty basic so I thought I’d catch everyone up!

Brady can do stairs! Which is SUPER handy, considering we live in a modified bi-level and we have three short flights of stairs. (No one plans for tumours and paraplegia, am I right??) When he moved home, he would either use a railing and a crutch, or a railing on either side. Recently, he’s gotten stronger and braver, and often just uses the one railing. To be clear, though, it still takes a good amount of concentration and effort, so if you talk to him while he’s on the stairs, he’ll probably have to stop to answer. Walking is still VERY visual for him, so he has to look at his feet while he does the stairs. Otherwise he doesn’t know where they are.

Brady can walk without crutches. Its happened. Its not smooth or graceful, but it can be done. His legs are SO strong, and his balance is improving! He’s also gaining confidence and trusting his muscles a little bit more. Its pretty exciting to watch. On this subject, you may have noticed in pictures recently that he more often walks with even just one crutch! Then he can carry things with him easier, and can be even more independent.

Brady still wheels around the house mostly but he stands from his chair all the time to reach things. He cooks at the stove, standing at his chair, and he preps stuff on a stool at the island. He barbecues like always. Our house was not built for wheelchair accessibility, and while we think that may have to change one day, he has found excellent ways to get around, reach everything, and accomplish everything that needs doing.

I truly can’t think of a whole lot that you might want to know about his abilities. He reinstalled a dishwasher and new flooring. He built a bunch of the deck at the lake, and built the stairs. He built his exercise bike. He chops wood. And there are more projects on the books that we still discuss regularly and plan for. Our dreams are not taken away. If anything, there are more of them! They make take longer to get to, or take a few more hands, but its not over. Not even close. Its just begun.

While much has changed, Brady is still a builder. I am so grateful for that, and I know for a fact he is too. This weekend, I watched him flourish yet again while building the landing, stairs, and railing for the deck at the lake. He sat on the chopping block, or the temporary stairs, or a 5 gallon pail, or whatever else. He balanced holding onto the side of the camper, or the structure he was building, or a crutch, or he just shuffled on his own. He CRUSHED it!

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The landing looks so beautiful, and is SO sturdy! We pushed some temporary stairs up to it, but they didn’t last long. Brady made some itty bitty stringers and made some really strong, sturdy stairs!!

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The railing finished up the next day!

I know I’m not sharing a ton of details, but I think his face says everything. He was SO happy to be able to build this unit. I think it boosted his confidence like crazy, and reassured him that all of his talents and skills are not lost.

“Disability.” Psh.

We cannot wait to go back to the lake!!!

Cher here!

I’m not trying to make anyone uncomfortable, but for those of you who don’t have a father – either because he has passed or he is not an active part of your life – we can relate that this time of year we sort of start massaging old wounds.

Without getting too much into detail, my “father” has struggled with substance abuse and narcissism my whole life, so I don’t relate to having lost a parent to an illness or accident. 

In this life I have learned that we don’t get to have everything we want or need, and that is actually a blessing. Without loss, hurt, or voids, we would all be cookie-cutter people with no depth or strengths to nurture. We wouldn’t have the opportunity to be perfectly unique. And that’s what every single one of us are; perfectly and completely different from everyone else. 

When I scroll Facebook and I see people with their amazing dad’s I remember my mom who did absolutely everything a dad could do. I remember Jesus who looks out for me, stands up for me, and protects me. I also scroll right on past and don’t spend much time thinking about it because it still does sting. 

Who wouldn’t want a dad on father’s day? The.. DAY! The day that we spend giving gifts, spending time, eating good food… writing sappy internet posts with beautiful pictures.

I just wanted to say, here I am. I can relate to you. You are definitely NOT alone. I, too, wish I had a Father on Father’s day. Hello, friend! We are a group of people who do such a good job pretending. 

I think there are many people out there who have absent Fathers who they feel like they are forced to celebrate. I acknowledge you too! I understand that there are so many ways to feel like you don’t have a Father, and not just because they are not physically near you. You are also acknowledged! 

Maybe you feel sad for your kids who don’t have a Father and you do! I acknowledge you too! There are SO MANY reasons why this weekend will make you feel kinda yucky. Maybe a little grumpy. Maybe you’ll buy a little extra ice cream, and that’s okay. You deserve it, right? I think you do. 

I started out writing this post for myself mostly, but then I started to realize that weekends like this can really conjure up a lot of self-loathing for many people in many different walks of life, and I guess I just wanted to encourage you because I also need it. 

We are not less because we have less. 

We are not defined by our losses.

We can do tough things.

We can turn pain into inspiration by staying transparent about how we feel.

By not shedding our bitterness, but transforming it into encouragement.

And if you don’t have a Father on Father’s Day, you are still worth the love you have not received from him. Just know that.

There was a noticeable shift when Brady came home from the hospital. Hailey’s body language went from uncertain and helpless to hopeful and relieved. It was probably a honeymoon phase of his return because there has been noticeable ups and downs since the cancer treatments have began. One thing about Hailey is that she is SO polite and sweet and loving that you would never know that visiting or asking for things or even giving her information can overwhelm her. There have been times where she has had visits and seemed totally chipper the entire time, followed by a crash because she just spent all the mental energy she had. Those visits can even be small ten minute ones, too.

Being Hailey’s best friend during this time has been a learning curve for us both. We still do see each other a lot because there are many appointments and things that need to get done daily and weekly, but we usually just have a coffee together and that’s our visit. The rest of the day is communication about household tasks, appointments, medications, and spending time with the kids. Nap times are a very sacred time for Hailey and Brady to intentionally wind down so they are refreshed for the rest of the day. Evenings are the same way, so they can be well rested for the morning the next day.

I have learned that these breaks have truly helped with Hailey’s emotional and mental management, as well as all the crocheting she gets done when she is able to sit down and think about nothing stressful. I never understood how important it was to keep visiting to a minimum during these times until I saw how much more capable she feels when she gets to be still. She is such a sweet, polite, loveable human being that never wants anyone to feel pushed away, disregarded, or ignored, so it is easy to take advantage of her time sometimes, when she really needs rest and quiet. We have learned a good pattern with that though, and sometimes you can’t avoid life stuff, but in the end, I think it’s really good to stay alert about her needs, even when she seems like she can take on the world. That’s just who she is. She is a beautiful soul.

Hailey has mourned her capacity many times because she gets anxiety attacks and physical symptoms when she does too much, even today. There have been weeks where some of those things are almost non-existent, but they still make an appearance, leaving her feeling completely bummed.

I will never know what it’s like to be told that my husband is dying from stage 4 cancer and not be able to be with him when I receive that information. I will never know what Hailey experienced in her heart during those months when Brady was in the hospital, or even how she feels today with his limited mobility and cancer treatments. But it was the help of her precious mom, Jeanne who really helped me understand what capacity truly meant. She was Hailey’s voice when Hailey didn’t have one. And I think it’s really important to highlight that because sometimes we DO need someone to speak up for us when we feel weak. That can be such a saving grace. It’s absolutely necessary to stay actively aware of the needs of others during a crisis even if that means we don’t get the time we want, or the attention we think we need. It’s about them right now. And even though sometimes it LOOKS like they’re absolutely fine, they are still healing from things we have no clue about.

Thank you, Jeanne, for all your amazing understanding during this tough time. Thank you for being such a wonderful woman, mother, grandmother, friend. Thank you for sticking up for your daughter in ways no one else could, and for recognizing her needs when she couldn’t. The world needs more people like you.

I fear that today’s post will do zero justice to the man who is the father of my children. But I will try. Words cannot express.

Brady has worked HARD since we had children to be a different kind of dad. One who is involved. Hands on. Emotionally connected and invested. Loving and gentle. Authoritative and safe. A father who makes no stereotypical comments of what “men don’t do.” He has diapered, fed, bathed, tucked in, and parented exactly the same amount as I do. He loves his boys and girls the same. There is no favouritism, and there are no excuses.

Then, February happened, and Brady was gone for more than two months. He came home paralyzed in the midst of cancer treatment that was kicking his butt.

And guess what. There were still no excuses.

Of course he wasn’t expected to do all the same things, and we had a TON of help. We still do. But his character did not. He is still the same man. Involved. Hands on. Emotionally invested. Loving. Gentle. Authoritative. Safe.

Roles have changed, of course, and there is a post about that to come, but Brady’s role as his children’s father has NOT. His wheelchair and spinal cord injury have not taken anything away in terms of his fatherhood.

Or, for that matter, in terms of his role as my husband. He is exactly the same man, if not stronger!!! I would confidently say our family is more tight knit than its ever been, and our marriage is thriving. We are healthy in the ways that are most important, and for that, I am SO grateful. Things would not be so smooth if not for God’s grace, and Brady’s willingness to accept the situation he’s in and roll (ha!) with it. His determination has always been one of his most stand-out qualities, but its really showing itself in a brighter light now, as if that is possible.

All glory to God! Thank you for this beautiful man you’ve placed in our lives. I couldn’t have asked for a better father for my children.

☝️

Brady is on day 7 of his 28 day cycle. Ha! That sounds like I’m talking about his period. I’m not. I’m talking about chemotherapy. If you missed the post about the details of his treatment plan, I wrote it all out here.

This won’t be an especially long post, but that is actually a really good thing.

He took his first dose on Friday, before bed, at the lake. By the light of a solar pineapple.

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We’ve been instructed that no one but him should really even touch the pills, because they’re dangerous chemicals. So thats a fun thing to think about as he’s swallowing them. I went to the kitchen and stood with him as he cracked everything out onto a kleenex. We prayed together, and then he took his first dose. Boom. There you have it. 320 mgs of temozolomide.

We were prepared for the worst. Brought lots of nausea medication. Gatorade. Ginger ale.

Brady suffered ZERO side effects from his chemotherapy treatment! PRAISE GOD!!!!! 😭

He took his five doses over five days, and there was no “hit.” That doesn’t mean there won’t be one. We are not completely blind to the possibilities. Everyone has a different experience. But many say the treatment days are the worst for pain, sickness, and discomfort, and they were completely manageable. Nothing changed. It was amazing.

There are more treatments to come. At least five more. Up to twelve altogether. That part is still uncertain. But we ask that you continue to carry us in prayer. We are still swirling in uncertainty, but are grateful for the smooth sailing thus far. We trust God has a plan, and is carrying it out in the way He sees fit. We are here, and we are His.

Goodnight, guys. Did you LOVE the storm yesterday?? I know not everyone is up for storms, but I love them. I have for a very, very long time. I don’t particularly love a good tornado warning, but I love rain and the kind of weather you just want to sit at your window and watch! We had some of that yesterday.

While the kids read in the living room before bed, Brady, Cher, and I went outside on the deck and watched the clouds. They were INCREDIBLE!!!

But seriously, they just got better and better. I don’t know if I’ve ever seen clouds like these. They were magnificent!

My favorite picture I took…

Isn’t it bananas??? 😍 The three of us were just dazzled. We didn’t want to go inside, even as the wind tried to push us off the deck or knock our phones out of our hands.

We love storms. I am SO grateful Brady didn’t miss any big ones while we were apart. Thank you, Cher, for documenting our celebration! Hahaha!

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It was a good day yesterday. A good storm. I hope there are many more.

Do you remember way back when I laughed at the fact that Brady’s phone was trying to count his steps, and was gently chastising his lack of walking? We laugh at stuff like that ALL the time. But today, one of his sponsored ads on Facebook really took the cake!

A standing desk. Because clearly, that makes great sense for someone in his position. I’m not sure what tipped the internet off to offer Brady this item, but at the very least, we got a good giggle out of it. And I hope you did too.

And if you didn’t, I’m sorry, because that is truly all I have for you today…