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This is Halloween

Halloween’s one of those holidays that I love so much! It’s so much fun to make the costumes and see a little deeper into our children’s personalities as they decide who they’re going to be each year.

But as much as I love Halloween, I find it always sneaks up on me. We end up with a lonely scarecrow and a couple pumpkins – which may not be carved – for decorations.

This year Ella looked at me with her big brown eyes all sad. And pleaded with me to decorate properly this year. I was a little panicked, but we came up with a couple ideas, and she loved it!


By the time we carved the pumpkins they were getting a little soft, but the kiddos still had fun!


Of course, the highlight of the holiday is trick or treating. And they had so much fun! Ryan had to work, so their Aunty and cousins came over to take them out while I stayed home to hand out candy. I really feel horrible leaving a dish on the step and not being there to hand the goodies out in person. But this year we had so few children, I kind of wish I’d gone trick or treating too!

Oh well. I did get lots of time to work with Chester and Moana on proper door etiquette. They were getting really good after the 20th monster came to the door! Lol

 

What’s your favourite part of Halloween?

 

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2 Weeks Post-Op

Originally Posted to Facebook March 2015

Everyone warned me it’d take 6-8 weeks minimum to heal after surgery. Most warned me that 6 months was more reasonable, before that I shouldn’t expect too much of myself.

I told them I had 2 weeks to recover, and that was it.

They shook their heads and told me I wasn’t allowed to lift more than 10lbs for 6 weeks.

So here I am at 2 weeks post surgery. I am not fully healed. I am not fully recovered. I’m not sure when I will be.

But I can lift my arms over my head, I can put on and take off normal shirts, I can reach dishes on the second shelf in our upper cupboards, I can touch my toes (you’d be surprised how much shoulder and chest stretching happens when you do that!!), I can adjust the angle of the van’s TV while driving (reaching above and behind me without turning my torso), and I can pick up my baby on my own. In other words, I can do most of what I need to.

So what can’t I do? Well, I can’t do jumping jacks. Raising my arms away from my sides is uncomfortable, I cannot lift both above my head at the same time (weird). I cannot lift and hold Brom for an extended time, unless his head is on my shoulder.

I’ve realized most of my limitations are not actually related to discomfort or pain, but a different sensation than I’m used to. I’m numb. I can feel pressure, but I cannot actually feel the touch. When I attempt to do something that I should feel, but don’t, my body wants to flinch, to stop automatically. It takes a lot of effort to convince myself that not feeling something is okay and pushing past non-existent feeling is also okay.

I am not fully recovered, and after a busy week, I would love nothing more than to not have to do anything at all for the next week or so (not gonna happen, unchangeable plans everyday for at least a week). But Ryan’s back to work Wednesday morning, and I will be okay.

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Bilateral Mastectomy

Originally Posted to Facebook March 2015

This post has descriptions of what I went through after surgery.

It’s been a few days since surgery. I suppose I could have posted something before surgery, but what would I have said? I could have written words of inspiration, an up beat message about looking forward to healing or some such nonsense. I could have written about how I was feeling leading up to surgery, but that wouldn’t really have done anyone any good.

Why not? Well, because, I was worried. Do you know the potential complications of surgery? I do. Of course I also know that the type of surgery I was scheduled for was pretty basic with minimal actual risk – no major blood vessels or nerves in the area. But knowing something, doesn’t always mean you can believe something. There was also the chance they could find cancer that was hiding, unseen by the scans. There was risk.

And I was nervous about what the post-op period would bring. Prior to surgery I spoke with several health care professionals and they all had some pretty scary things to say about recovery – the level of pain I’d have, the level of (lack of) mobility, the various (guaranteed?) side effects.

*Though the surgeon and the physiotherapist both said things wouldn’t be as bad as everyone else said it would be.

Whenever someone told me how bad it’d be, I told them the surgeon said it wouldn’t. They told me the surgeon was wrong. (It’s really scary the number of nurses who told me the surgeon was wrong and what she was wrong about, also scary is that the nurse crossed out the pre-op instructions that were in the book, and wrote in her own ‘old school’ pre-op instructions, b/c she “didn’t feel the new ones were good enough”O.o)

I’m prone to anxiety to begin with, leading up to surgery I was having mild panic attacks daily. These are still continuing, but lessening each day as I realize all the scary things everyone warned me about haven’t happened.

So what has happened?

I spoke with student interns, residents, the surgeon, anesthesiologist, nurses, a pharmacy tech, and a physiotherapist prior to surgery. Each time everyone confirmed what surgery I was going for, which lymph nodes, anesthetic concerns, and what I planned to do for pain after. I was lectured by more than one person about how motrin would not be enough and refusing morphine, tylenol 3, and other controlled substances would cause me to have major complications. Yeah. Panic. (I do not metabolism drugs well, so narcotics knock me out for a LONG time, I didn’t want them).

It was time for surgery. I arrived in the OR, an IV was started, I was positioned on a chest binder for post op, given a mask, and then I was out. Next thing I was awake and rather joyful to still be alive.

My throat was sore and dry, I enjoyed some ice chips, my blood pressure and other vitals were checked and once I was more fully awake, they brought me to the unit.

On the unit I moved to the bed of my own power, using my arms. At this point I really wanted to point out to the nurses that my butt weighs more than the 10lbs they told me was the max I could lift. But I didn’t. My babies were all in the room and needed to see me. This was kind of a blurry time. I stayed awake for a while, but it didn’t take long for Ryan and the kiddos to head home, and I drifted in and out for several hours.

I had an amazing nurse, from Tampa, for the evening, it really helped to have a kindred spirit to visit with. I think all my gabbing may have caused her problems with the shift though, she had 4 other fresh post-ops, and I just wanted to talk lol.

Supper came and went, I was done with sitting in bed. I had some discomfort, more when I tried to hoist myself around the bed, but nothing too significant. I figured I must still be numb and the pain would come later. I watched Big Hero 6, read a book, and ran out of things to do. So, I walked laps. Lap after lap of the unit. I played tetris for about an hour and a half (my battery died). I was ready to go home and it was less than 12 hours post op. I ate all the snacks I brought with me, plus drank some tea. And water, and juice. And was up to the bathroom every few minutes. That’s what they want. Movement. I obliged.

Eventually I went to bed for the night, well, for 4 hours. Needing to get blood pressure checked kind of wakes a person up. I was too tired to notice the nurse decided to check my blood pressure on my  arm – big no-no – I had a thigh cuff, she went out and found an arm cuff and checked my blood pressure on my arm instead. I was awake by that point, but it was too late. She told me it didn’t matter and taking blood pressure wouldn’t cause any problems…I’d like to see her research on that.

Supper had been at 6 the night before. Breakfast was at 9 – after being woken up for the day at 5:30. Yeah. I was grumpy and by 7 already calling Ryan to come get me.

He was still asleep and didn’t answer the phone.

I had a discharge co-ordinater come in and tell me someone else already arranged home care and discharge. I had a discharge nurse come in and go over stuff not related to my surgery, but I also had a pile of doctors come in and discharge me. I liked them.

I was terrified of the drive home, more specifically, I was terrified of seatbelts. But lack of nerve endings mean there’s very little sensation in the area, so the seatbelt wasn’t an issue after all.

At home I have 2 drains attached to me that I need to empty several times a day, they should be out soon. Once they’re out, I suspect it’ll be easier to get around and do things. Right now the tubes get caught on everything, so I have to be very careful to be sure they don’t get pulled.

I still wear the chest binder. It helps prevent swelling, holds the dressing in place, and is supposed to help prevent nerve/pain issues in the future. I need a smaller size though, the large size they gave me slides down. But for now it’s okay.

There is some pain. I’m missing body parts and am all stitched and taped up. But the pain is mostly with movement. I can lift my arms straight out in front of me. If I push a bit I can get them slightly above shoulder height. Getting things in and out of cupboards is difficult. If lying on the floor, I can slide my arms up to almost shoulder height. I need to use my hands to ‘walk’ my arms up that high. If standing up, I can lift my arms to almost 45* (sideways) from my body.

Every movement that’s more than slightly off midline is uncomfortable. Everything stretches and pulls, I feel the bruising, I feel the stitches. That discomfort prevents me from doing too much. When I wake up in the morning, I can almost forget I just had surgery. By afternoon I know.

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Why Did the Oncologist Page Me?

First Posted to Facebook Feb 2014

Last week, February 5th, was the feast of St. Agatha, the patron Saint of breast cancer patients. Last week, I also had some medical imaging done to see how the chemo’s working. This week, I went to get my results. I was also getting my blood work done – if you’ll recall this is a full week earlier than normal, and the Dr was certain my white count levels would be low and likely push the next round of chemo back. So today’s appointment was really important for several reasons. Pushing chemo back, would push the surgery back, which would not be good.

There I was, just minding my own business at the Cross Cancer Institute, I’d just had my blood work done, and I had 30 minutes until my appointment time when I was paged over the intercom.

Ryan and I were a little confused, but we went to the desk the message said to go to. The receptionist asked us to just wait a minute – the Dr. had ran out quickly to try to find us (?)

It was important he found us as quickly as possible. We were really confused at that point, but shrugged and waited. Maybe my white count was so low he didn’t even want me in the building? Maybe the imaging showed something worrisome? A million thoughts ran through my mind. We waited.

When the doctor entered the room, he was extremely cheerful and surprised.

As far as the imaging is concerned, there is no cancer. Neither the ultrasound, nor the mammogram could find any indication that I’d ever had cancer.

And he was shocked. Not only were my white blood count levels normal, they were as good as my pre-chemo, pre-cancer blood work. A full week earlier than my normal blood draw. Chemo goes ahead as planned next week because as far as they’re concerned I’m super healthy!

Let’s recap – Normally the dose for chemo is a certain amount per body weight. But b/c of concerns with my liver and white blood count, I’ve been at 80-90% instead of 100% of the dose.

I was supposed to have 8 rounds of chemo, instead I’ve had (less than) 5 and am cancer free. I will do the 6th round of chemo next week, but even the oncologist agrees that there’s no need at all for the other 2 rounds.

So I’ve had a lot less chemo than others, and the cancer is gone earlier. I’d call this a win. I am so thankful for all the prayers, love, and light our family’s received during this journey. I am confident with your continued support the surgery and recovery will be just as easy!

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What Roads May Come

Originally Posted to Facebook Jan 2014

We don’t know what our future will hold. We know what we hope our future will hold, but that’s not the same as what will come to pass. I mean seriously, I have the next 8 years of trips being planned as we speak. I know what I want. That’s life. That’s health, it’s love, laughter, and wellness.

But that may not be my road. And we’ve had to talk to our children about the possible paths our lives may take.

The likelihood is small, but I could die. We’ve had to talk to our children about that. Poor, sweet Agatha has cried so many tears thinking about it. And she’s wrapped herself in a prickly, iron coat to protect herself. I ache watching her go about her days right now, troubled by everything, and nothing. Ella has cried, but mostly she’s stepped up and taken on so many new responsibilities. She’s become a very self-sufficient young lady, who happens to need about a million times more cuddles each and every day.

Cordelia talks about my surgery and when my breast will be ‘chopped off’ several times a week. She has to look at my body every chance she gets, and asks questions about what I’ll look like. And sometimes she cries. But mostly she trusts us when we tell her it’ll be okay. I hope we’re right, and we don’t abuse that trust.

Brom, sweet, snuggly Brom. He hasn’t asked to nurse in a week or so now. I cry each night wishing I could still snuggle him and nurse him as I planned. Yes, we still cuddle him, and feed him with love, and respond to his nighttime needs. We still give him everything he needs. But now it has shifted. Mama isn’t the most important person in his life. And he’s so little. This wasn’t what I planned.

We’ve had to talk about the possibilities of blindness. Who knew that chemo can cause cataracts? Hmm, the information was there, but I didn’t really consider it. Until a nurse became very concerned when I mentioned I needed to start wearing glasses almost all day long instead of just on occasion.

The thought of blindness, even temporary, has left our children really upset. That’s just one more thing for them to worry about. I’d love to protect them from these worries, but how do you do that when they’re here, experiencing this journey with us? Hiding the risks, the possibilities won’t help them if they come to pass. Instead our children would be even more confused, hurt, scared.

Right now things are pretty good. But we have tears, and meltdowns roughly 600 times more than usual right now. Even though things are going well, I still have many doctor appointments, medications, and our future is up in the air for now. We do the best we can to support our children, always talking, and doing what we can to offer them empathy, as well as outlets for their various needs whether it’s art, physical activity, or friends to play with.

We talk, we offer love, and we do what we can to support each member of our family in whatever way they need. This involves a lot of talking, and a lot of patience. I hope that no matter what the outcome of this journey, our family will come through stronger than before. Our children will come through knowing love and light. I do not want them coming through this afraid, anxious, or worried.

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Fasting and Chemo

Originally Posted to Facebook Jan 2014

I’ve had 4 rounds of chemo so far, and have one week until the next round.

So far I’ve been doing super well,  I have almost zero side effects (though you may get to find out what I look like with no eyebrows or eyelashes very soon). Fasting seems to be a good thing. Though my oncologist doesn’t think it does  what it’s supposed to do –  keep my white blood count from dipping dangerously low, and to help it rebound faster. In fact even taking the super expensive drug, neulasta, (that’s supposed to increase my white blood count), my blood work has shown my white count to be super low. Which seems surprising – to my oncologist.

I stopped taking neulasta after the next blood draw. The side effects were horrible, and my blood work was AH-mazing!

But not to me (I’m a bit of a nerd and spent a lot of time researching fasting prior to trying it, I even contacted Dr. Valter Longo  – and was THRILLED when he responded). I keep saying I think the blood work is inaccurate. (okay, just hear me out) You see, they keep checking my blood work after I’ve been fasting for 36 hours. In a (very small) human trial, fasting has shown a significant reduction in white blood count, in a large study on mice, the results were even more pronounced. During a fast, white blood counts bottom out.

So why would I fast if studies show fasting does the opposite of what I want? Because once I begin eating again, food is supposed to ‘reboot’ my stem cells and increase my white count, cause a rebound much better than the drugs (neulasta) have managed to do.

So not only is fasting supposed to protect my regular cells from the effects of chemo, and cause the chemo to better target the cancer cells (thus become much more effective), but it’s also supposed to prevent the need for all the other drugs for side effects. (Though I’m having a difficult time convincing anyone that not taking them would be a good idea).

But on Friday – 4 days earlier in the cycle than I’ve previously had my blood work drawn, I will have my white blood count levels checked  while I’m actually consuming food. I’m excited to see what happens. So far I’ve had to postpone chemo once and almost a second time b/c my white blood counts have been so low (my blood work has consistently been drawn at 36 hours into my fast or later).

This brings me to another problem. I want to continue fasting for chemo – but the drugs they have me on for side effects must be consumed with food (they insist these drugs are necessary, but so far I’m not sure why). And since the chemo I’m on now is harder than the first type, according to ‘them’ (so far each round has been better than the one before, instead of building and getting worse each round, I feel better, and more normal each round). I am supposed to take the side effect drugs more often. So instead of having a bit of food the morning of chemo, I’m supposed to have a bit of food twice a day for 2 days before chemo.

It isn’t a lot, but when the goal of fasting is to shut everything down, a bit of food could be too much. So I have another plan. The Ketogenic diet. Which sounds really yucky if I had to do this for more than a day or two – I mean, I LOVE food! A LOT! Ask anyone who knows me lol

But a ketogenic diet for a few days before my ‘fast’ begins will begin the process of switching my body from using sugars as energy to using fat as energy – and begins the ‘starvation’ protocol the body goes through. But b/c I’m getting enough calories my white blood count will not drop to the super low levels I see while fasting. So this should not affect my blood draw on Friday – but it’ll allow my body to more easily enter the fasting state even with the ketogenic snacks I eat to prevent the side effect drugs from causing side effects that are really bad.

*If anyone is interested in hearing more about fasting and chemo/cancer please let me know. I can give more specific information about what I’ve done. *

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Round 3

Originally posted to FaceBook Dec 2014

*Please Note, I fasted 72 hours prior to chemo, and 5 hours post chemo each round*

 

I’m doing awesome! I’ve taken up running again. It’s been far too long,  Or maybe just long enough that I’ve finally acclimatized to Canadian running…? Ahhhh  how I’d love to run on Bayshore BLVD tomorrow. Palm trees overhead, water lapping against the white stone wall. Needing no more than shoes, shorts, and a sports bra.  Instead it’ll be in the frozen cold amongst half built houses wearing ski pants, a winter coat, mittens, a toque, a hood, warm socks, massive boots…

Anyway. I’ve taken up running. I’m working out. Fasting more than seems sane, but strangely it works for me. Who knew I was capable of fasting for more than 3 hours? let alone 3 days? Heh.

I feel great, well other than my cold head. Yeah, bald may be beautiful, but I appreciate all the head covers that keep me from freezing in this arctic air. Really, would it kill ya to turn up the heat? Oh. It’s already at 25C?

Really I feel good. I don’t feel sick, I don’t think of myself as sick…But in a couple months I will no longer have breasts. In a couple months my body will be very different as a surgeon cuts this cancer out of me. In a couple months I’ll find out if I’m one of the lucky ones who’ll experience phantom breast pain for the rest of my life. If I’m one of the lucky ones who can barely stand to wear clothes anymore for the pain that comes with anything touching the scar tissue. In a couple months life will change again.

I wonder if the pool will have a problem with me going topless? No nipples, no problem. Right?

In a couple months I will need a new wardrobe as the one I have won’t quite work for me anymore. No longer am I a breastfeeding mother. No longer will I have breasts. Sure prosthetics can be worn, I don’t really know how that’ll go, but I can imagine the discomfort of slipping a fake breast into a bra pocket, with no real breast to hold the bra in place. I envision breasts sitting under my chin by noon…hmmm, could be interesting. Maybe I’ll get free drinks? Yeah, I didn’t think so either.

But seriously. It is really weird to think ahead to the changes my body will go through and try to plan for something when I have zero experience to base this off of. No previous surgeries or major injuries. Childbirth was a breeze so I can’t really compare. I can plan for the worst, but what is the worst? Well, having not gone through it myself, I can only go based on patients I’ve talked to in the past, and that’s about it, because I haven’t really looked into it anymore than that. What I’ve heard isn’t pretty…of course what I heard about childbirth, and chemo wasn’t pretty either… But in the past, I planned for the worst and that’s served me well.

Plan for the worst, pray for the best.

 

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Round 1 of Chemo

Originally Posted on FaceBook Oct 2014

 

Day 1

Doing well, or not doing well? Hmm it’s tough to say.

My head feels funny, my body feels funny, my legs feel like lead, and walking up the stairs was rough. Much of that may be related to the meds I’ve taken for side effects. Fasting for 3+ days can also do that. Over all, it’s not bad per se, but I definitely don’t want to feel like this for long.

Oh and I’m glowing orange right now. I figure I’d better mention it b/c it took Ryan and I aback today. I can usually control it with diet, I have Gilbert’s Syndrome, but fasting causes my bilirubin levels to skyrocket – usually I’ll have a tinge of yellow in my eyes. Today even wearing ‘good’ colours can’t hide my yellow/orange skin. Chemo can also cause liver problems, but this is not related to chemo – and should dissipate a few days after I begin eating again – but don’t be alarmed if I look really yucky! 🙂

I’m hungry. I was hungry to the point of feeling nauseous, so I had some amazing lentil soup. Not much, just enough to take the edge off. Fasting can only help if it doesn’t actually make me sick.

I have a checklist I’m supposed to fill out each day. It’s a list of side effects a full page long. I’m supposed to make a note if I have those at all during EACH day until the start of the next cycle. I also have to rate how bad. And if it gets to a certain point, I’m supposed to call the Cross, health link, or even head to the ER in certain cases. Today I can happily check of no symptoms in most cases, however, I am no where near my normal activity level this evening. I hope that tomorrow is much better as I come out of my fast.

I really appreciate all the positive messages and thoughts today. It really helped me stay positive. I feel very loved today.

I also have to say an amazing THANK YOU to all who sent food, watched our LOs, offered free parking, and cleaned our house! (I know how dirty our house was so that was a huge HUGE undertaking, and we really appreciate it)!

Heading to bed 3 hours earlier than usual now. Good night, and thank you for the amazing support.

Day 4

The past few days have been difficult. The one medication I take to combat side effects, has a whole pile of other side effects that make life difficult. Some of those include feeling like my gut is full of lead. I eat, and then the food just sits there for hours. It sucks. It also makes my limbs feel weak, leaden. I feel fine, and then I take it, and I feel yucky. Fun. But the ‘best’ part is I have to take it twice a day, and the second dose prevents me from sleeping. So I stay up half the night, then when I wake up in the wee hours of the morning, I can’t fall back to sleep. So max 4 hours of sleep a night, when I should be healing.

Today was the first day I didn’t need to take the drug. Yay. The problem is that my body is so tired from not sleeping for the past 3 days that I just can’t move. I stayed in bed until 10 today, and was back down to nap by 2.

According to my handy-dandy checklist of symptoms, this is something that warrants calling the cross about and discussing. So I did. They said, ‘Yeah, that sucks, that’s one of the side effects, but about 2 days after stopping that drug, you’ll feel better.” So hopeful tomorrow will see improvement, and the day after will be even better.

The good news is that this is the only real side effect I have, and it could be worse. But it is very frustrating to not be able to pick up my sweet little baby for more than a few moments before my arms just weaken too much to hold on anymore, and there’s no way I could pick up one of my big girls.

I can clearly see I’d better make a concerted effort during the good days to exercise so I don’t waste away!

It’s been very difficult for our family. We’ve been graciously blessed with friends that have cleaned our home and cooked us food. And as much as I love a treat now and then. This is different. Our home was a mess, not the typical 4 kids and a dog mess, it was gross. After 2 weeks of tests and appointments, dishes were piled up, bathrooms were filthy, and we couldn’t find floors or countertops in most rooms. It’s one thing to have someone come and help out. It’s very different to admit you just aren’t coping with day to day life.

It’s almost painful to look around and weigh the importance of what needs to be done, to decide what can wait 6 + months to finish – or even start in some cases. It’s difficult to want to do something, but then be too tired to even walk into the other room, let alone do anything more than that.

It’s difficult to sit today with the gorgeous snow outside, our girls building snowmen, and me sitting inside, not joining in. Our lives are going to be changed over the next few months. I don’t know what to expect. Is today the worst of it, and then it gets better? Or is round one the best of it, and day 4 of round 2, day 4 of round 6, day 4 of round 8 going to be even worse?

Those are questions with no answers. Educated guesses can offer some guidance, but those guesses do not bring peace.

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Cancer Made me Wean My Baby

First posted on FaceBook October 2014

 

Brom turned 14 months yesterday, I nursed him for the last time. It was a beautiful moment, and also deeply sad.

Today he has been absolutely distraught asking and asking to nurse. We have been here for him, offering him snuggles, love, his comfort songs, as well as water to drink. Obviously nothing is good enough.

His entire life every morning has basically been the same. He wakes up, we get him a fresh bum, and then we snuggle and nurse, tell each other stories, giggle, and kiss. And today that changed.

We have both been crying, all of this has been so much more difficult than I ever imagined it would be. Our plan was to nurse as long as he wanted, but plans changed. Today my baby needs me, today my baby wants me, Today I can’t help him. It wouldn’t be safe.

Today more than anything I want to lay in bed beside my sweet boy and nurse him. More than anything I want to hear his little song he sings as he nurses.

But life had other plans. Today my boy is 14 months and 1 day old and he cries for his mama and I barely have the strength to hold him, to comfort him. He has no clue what has happened to his world. He cries. I cry.

Yesterday I started chemotherapy for breast cancer. Today my milk and tears are toxic.

I ask each of you to take a moment when your baby wants to nurse, look down and treasure that moment. It will not last forever, no matter how long it seems now. I’ve been nursing a baby for over 7.5 years straight and today I wonder where the time went and how I could have ever wanted that time to pass.

Today I cry instead of nursing my baby.

 

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Autumn

There is nothing so wonderful and joyous as autumn in Alberta. The brisk air, warmed by brilliant blue skies and sunshine, wrapped in an earthy musk that lightens the step and quickens your pulse.

Before the snow hit, our family took the time to get out and enjoy one of the gorgeous forests in our area.

When you go into a living forest with someone you love, it doesn’t matter how much noise they make as they race screaming and singing up and down the hills, you all come out more in love, more in tune than when you entered.