As Clem pointed out last night while we were on our walk, it’s an anniversary of sorts for our little family today, and I’d nearly forgotten. After being holed up for so long, the flipping of our calendar has been sorely neglected…where has time gone? A few years ago, our brave, young, little girl named Caelan, gave herself the gift of empowerment by making the choice to shave off all of her long beautiful hair, in an effort to try and take back some power, in her journey through cancer.
Yes, she decided to shave her head, as in she decided for herself. And, she was 6 years old. I haven’t shared much of Caelan’s story yet, but I will, and you can find the beginning of that here.
One of the ‘less harsh’ side effects of chemotherapy to deal with, or is it?
We’d mentioned to her before her hair began to fall out from the first round of chemotherapy she’d had, that she may want to consider cutting it or shaving it all off before it fell out in clumps. As a girl with long hair, this was a terrifying and distressing side effect to deal with, besides the rest of the huge ass list. It’s funny because society equates that shiny baldness to cancer, in reality, it’s the treatment and not the disease. Just funny to think that we think about it as a disease thing and not a treatment thing.
I will never forget the day that her hair started to fall out. There was no warning and because it’d been just about two weeks since her first treatment, we’d hoped she would be one of the lucky ones who didn’t lose their hair. I really doubt anyone gets away with it, but I can’t assume because that would make me look really stupid.
We’d noticed that many of the families we’d encountered in the pediatric oncology ward, simply allowed their child’s hair to fall out on its own, instead of shaving or cutting it. We’d sometimes see the kids walking around with a few thick but thin wisps still clinging to their scalps, in a patchy formation and often asked Caelan what she felt comfortable with. She’d watch the children, completely and terrifyingly engrossed with a wide eyed glare not visible to most, and I felt that she had moments of contemplation that consisted of, is that what’s going to happen to me?
She wasn’t certain what to do prior, so we knew she’d let us know when she knew, if at all. Making a decision such as this, is subject to a vast sea of emotions, and reactions will vary greatly. It’s not as simple as you’d think.
And that’s when reality set in
I will always remember Caelan’s little trembling, terrified voice, yelling for me to come and look at her pillow that morning, shortly after awakening. I will never forget the large clump of hair on her pillow. Her long, beautiful, healthy, multi-faceted shimmery hair (you know how a young child’s hair shimmers, what we always try to accomplish with hair dye but cannot replicate, nature’s beauty?), lying detached on her pillow.
It was a slap in the face really, from reality. Although she’d gone through one treatment, it’s weird to say that things continued like normal, once we got past the first few days following. She still had her hair, and she was still just herself and although we’d encountered many of the things associated with treatment, we’d had about a week of a somewhat seemingly ‘normal life’. As I’ll get into later, that was short lived.
There are no words to describe the feelings that reverberate throughout your body when a very harsh and inconceivable reality sets it. I can only describe it as an earth shaking hum. It’s an overwhelming sensation that takes over everything, your bodily sense, emotions and of course your thoughts and reasoning. Seeing her beautiful hair lying there, triggered it’s intensity as I seemed to have been living with that ‘hum’ since the appearance of the lump that nestled near her collarbone, signifying a fast approaching, ominous event. I can still feel it as I write.
It took Clem and I a little while to calm Caelan down, and remind her that this was going to happen. I had wished that Lea would’ve lived close by at the time because she could’ve cut Caelan’s hair short before we even started treatment. This may have helped to possibly avoid the trauma associated with losing copious amounts of hair caused by chemo. As it was, I highly doubt that a haircut would’ve happened anyway, due to all of the other hurdles we had to navigate before her first treatment. I’ll get into that story at a later date, I promise.
Time to rally the troops
Anyway, we had talked to Caelan previously, and asked her what she wanted to do when the time came and her hair fell out. I realize that she was only 6 years old, but we felt that by involving her in this process, it would help her feel some sort of control over some of the aspects of her journey. I feel that many would criticize this, but it truly did make accepting everything easier, as I’ll write about later as I promised above.
I remember sitting with the girls and Clem prior to treatment starting and discussing what we were going to do about this common side effect. As you may have guessed, we try and plan ahead to an extent. Caelan was terrified and her sister even more so. Clem and I were more worried about the smorgasbord of other things that could happen, and hair loss was the least of our worries, but that was about to change.
There’s something about seeing the fear in our kids’ eyes that immediately brought us to their level and initiated another degree of understanding. We had so many other things to worry about and focus on, but we also knew that this was an integral part of the journey. We wanted to try and lessen the blow as much as we could, and give Caelan as much control as we could. If we were worried, I can’t imagine how she felt, so we always had to keep in mind her consideration, in addition to ours.
We discussed that if Caelan wanted to just let her hair fall out, she could totally do that. She had a choice. If she wanted to take control of the situation, and avoid watching each strand fall out until she was completely bald, she had the choice to cut if off to make it a little less evident or shave it right down and be done with it entirely. She knew that being completely stressed out was no fun and that watching her hair fall out was a constant reminder of what she was dealing with, essentially stealing more days of her childhood from her.
I think what people often forget, is that these are children. And these children, are dealing with adult situations. I wanted my kids to be kids as much as possible, while being able to have some control to navigate these scary as fuck situations. Is it possible to have the best of both worlds? I’m going to say yes, to a degree, and dependent upon the situation or how you see it. As I’ve acknowledged before, I’m not perfect and everyone is different, so take it with some salt. This is just how we approached our situation.
She was going to end up bald in the end, so we spoke of hats, sticky tattoos, glitter tattoos and all of the cool things we could do to make Caelan’s bald head even more beautiful and inspiring, like a piece of art. I felt that we should make it fun and exciting because it was going to be a brand new experience entirely and I didn’t want her to fear it. She had enough fear. I wanted her to be creative and come up with some funky ideas and own her baldness. She’s beautiful, and hair is just an accessory.
The motto we started using was, it’s only hair. To reinforce this idea, I told her that I’d shave my head too, like Bic it bald (shave it right to the skin, no stubble), for as long as she was shiny bald. Not only that, Lea and her family vowed to buzz it all off too, and although Grandma still wanted to keep her hair, she would cut it very short as well. I think Grandpa did too, just not as bald as some of us. Clem, well, he belongs to the ‘buzz club’ already, so he decided to actually take it all off and Bic his head for the first time, with me. Lola wasn’t so sure, so that was up to her.
The meaning of hair
Now, I never thought I’d ever do this in my lifetime, and I’ll be honest, I had very long hair growing up and I never wanted to part with it. It was a security blanket of sorts for me, and I know that there are many who share the same feelings about their hair but I can’t imagine losing my long hair as a child. I don’t think many acknowledge this feeling and truly understand what their hair means to them, until the threat of loss becomes a reality.
Society has made it a huge part of who we are. I remember when I finally decided to cut my hair, and I’ve let it grow back and cut it again many times over the years, but it was my decision to do so. When that decision is taken out of your hands, and your ‘security’ is gone, I can only imagine the feelings of vulnerability that would creep in. Imagine being a child and having to navigate that.
After we got everything settled down, we decided to have a shave party that evening. We felt that it should be done sooner rather than later because as the day wore on, long wisps of her hair began to fall out in clumps and cling to everything it came in contact with. Imagine that wrapping up in the vacuum cleaner! It also didn’t help that Caelan (who became a little more comfortable with it falling out) began to gently pull it out to show how easy it was…kids. Don’t be fooled though, she was still quite afraid when it came out all on its own unexpectedly.
Shave party! Be there or be square!
I called my sister and told her, it was game on. She was supportive of a shave party and I think it gave her the chance to be able to do something for Caelan, no matter how far away she was. I remember feeling that numb humming feeling, all throughout the day, in anticipation of our taking back control of our lives. I was going to experience something new in its entirety, and felt nervous about it. I had to keep a brave face because I wanted Caelan to feel empowered and unafraid, inside I was dying, her long beautiful locks were about to be history.
I remember cuing up Skype and putting my sister online so she could partake from afar. We were having some issues with the connection, but we managed. I told Caelan that she could shave my head first. Yup, I gave my kid the clippers and I basically told her to go to town. Who’s that crazy you ask? Me. I am. I’d do anything for my kids, even and including letting them shave my head.
I thought, she’d be gleefully excited about shaving off my hair, but I didn’t expect her empathy and compassion to take front and center, just as she was about to make her first pass. She told us that she just couldn’t do this to her mom. I could imagine that a kid with clippers in their hands, at the ready to shave their parents heads bald, would be an exciting and memorable endeavor, but not for Caelan.
There’s no manual for this
We see our children and we think we know and understand them because we spend a ton of time with them and in instances that reveal their true nature and character. But that day, in that moment due to the circumstances she was in, I was privy to an understanding at a depth that I’d never thought I’d ever encounter. There are no parenting manuals or books that tell you what to say or how to proceed from there, believe me, I’d have found it if there was.
I struggled for a moment, wondering what I should say or how I should proceed. She felt pain for doing this to me, which really made the pain that she felt in losing her hair, that much more evident. She couldn’t do that to another human being despite their willingness. Her depth at that age, still haunts me.
We stopped the buzzing clippers, and I looked into her beautiful blue eyes and told her that it was okay. It was only my hair. She was worth more than my hair or any other’s hair. I told her that I didn’t want her to be alone and I wanted her to know that she had us right beside her. We were all going through the same things as her, despite not having to endure every barbaric procedure. If anyone looked at her, they were going to see us. We’d all look the same, nothing to see here folks.
She understood what this moment meant and asked me over and over if it was okay. Every time she’d ask, I kept reassuring her. She finally accepted my answer and felt comfortable with what she was about to do.
There’s no turning back now
With that, we turned the clippers back on and Clem helped her take the first swath of hair off my head. Her gasp told me there was no going back. I was perfectly okay with that. In the background, I could hear the ferocity of my sister’s shears, as she and Wade took off her beautiful hair simultaneously across Skype.
That also haunts me. If I’d have known that she would get cancer and die not long after this, I would’ve never let her shave her beautiful hair. Funny how similar this reaction is now, in comparison to Caelan’s back then, to me shaving my head. Lea would’ve told me she was doing it anyway, and that’s the nice way she would’ve told me, hardy har har! I miss her.
I have to say, shaving your head is a unique feeling. I felt very naked, and cold, but that was overtaken by the feeling of oh my God, what have I done?! Too funny! To be honest, I loved the feeling of not having hair. At that time though, I wished it could’ve been done under different circumstances.
Caelan shaved off my hair, Clem cleaned up some of the patches and then it was his turn. She buzzed him and I cleaned it all up and Lola decided to shave a ‘panel’ of sorts, into the one side of her head. I’ll never forget watching the pieces of her long beautiful hair falling into the pile on the floor.
There were a few hoots of support that emanated from the laptop from Lea and the boys, as Clem buzzed it the best he could. Lea piped up and said she’d come down and put some streaks in Lola’s hair for doing that for Caelan. Lola is very sensitive about her hair, so by partaking in any shaving, was a huge contribution of support for her sister.
I remember when the time came for Caelan to take the hot seat. She was nervous, but she wasn’t as terrified as before. All of the shenanigans prior to her seating, created a different kind of energy surrounding the ritual. Lea and I laughed about the craziness of the experience while the shavings occurred (I wanted to cry at times because my kid was sick, but I couldn’t do that to Caelan). Caelan saw that Mom, Dad, Lola, Lea, Wade and the boys, did it for her, and really, it wasn’t a huge deal because we were all going to pretty much look the same. Strength in solidarity.
The silent stoicism of a 6 year old
Caelan sat on Clem’s lap and I remember asking her if she was ready. She bravely told me yes, several times, before the buzzing began. I had placed my laptop so that Lea and her family could watch as I buzzed her head. I couldn’t look at them, afraid to burst out in tears at having to do this to my youngest daughter. At the same time, all I could think about was how brave she was. She didn’t cry, or piss and moan, she just rolled with it and owned it.
As her long locks hit the floor, I knew our lives had changed forever. We decided on and chose how we were going to walk the path, instead of letting life drag us. I gently ran the clippers over her sweet little head, taking off the long strands that had been a part of who she was for the last 6 years. Some of her hair in the freshly buzzed spots, gently rubbed off of her head and on to my fingers. There was nothing holding it in place and I realized that it wouldn’t be long before she was completely bald and shiny.
I kept thinking to myself how outrageous it was that people had to go through shit like this with their kids and I think that’s when the vow within my own mind became set in stone about tackling this problem head on. Why are our kids getting sick and why hasn’t it been a priority to understand and avoid it? I already know the answer, and one day, I promise to make a difference. Count on it.
Once we were finished, Clem and I retreated to our bathroom and proceeded to Bic our heads to baby smooth perfection. If you want to have a crazy bonding moment with your significant other…don’t be so damn dirty people ha ha ha!, shave your heads together! Crazy? Yes! Would I do it again? Yes!
In fact, with this lock down in place, and my hair appointment being cancelled over a week prior to, I was in desperate need of a haircut and decided to just buzz it all off. I didn’t Bic it, I just buzzed it right down. Honestly, I love being bald. It’s freeing. The best part, was that I let Caelan do most of it. I was a little nervous about how she’d feel, but she thought it was fun and as I explained to her, it’s okay to choose to cut your hair how and when you like. She understands that, and by allowing her to help me, I feel reassured that we didn’t trigger any traumatic feelings about it. She’s even toying with the idea of cutting her hair again one day because change is good and it’s only hair.
She understands that the power of the decisions made regarding her own body, is empowering and unique to each one of us. Did this help her get through treatment? She will tell you with 100% confidence that it did, for as much choice as she had. I will tell you this, there isn’t much wiggle room in regards to pediatric oncology…what century are we in?
I can’t believe I even have to say this, but I’m going to. What the hell is wrong with some of the adults in our society? If my kids can understand this, why the hell can’t they? Shame. Society can take its shitty ideas about the way it thinks people should be, and shove it sideways. All I’m going to say is, walk a mile.
If you truly want to see beauty, shave your head voluntarily. I highly recommend it, what an eye opening experience. I’ll write about people’s opinions about us after this experience soon. It’s vaster than you can imagine and was appalling at times. Unreal.
We took family pictures afterwards because I wanted to remember that day despite wanting to forget so many others. It was the day that we decided to take back our life and live it how we see fit. There was no going back after that.
So today, being the anniversary of our taking back whatever control we could have in our life, we celebrate our survival. Here’s to the bumps in the road we owned like the bosses we’ve had to become and here’s to our kids and what they’ve taught us throughout this journey.
Here’s to celebrating all of our stories of survival, cheers!