Somebody I really admire once told me “You can have bad days but it doesn’t have to mean you have a bad life”
Her wisdom has stuck with me and thinking with her logic makes it difficult for me feel sorry for myself.
I mean, some days I feel super shitty about our situation because cancer is so fucking challenging.
Every single day is tough and the truth is, as time goes on it only gets tougher.
I hate it.
And I feel sad and angry and more than anything,
I feel tired.
So. FUCKING tired.
Of all of it.
Every aspect.
Providing 24 hour round the clock care is exhausting. Logan’s needs are intense and I feel like I never get a break and its draining and I am torn between wanting to run away and wanting to stay put.
Cancer is consuming.
All. The. Bloody. Time.
Living this life, every single day, truly is a struggle.
An uphill battle.
We may try to make it look easy but the truth is, it is far from easy.
It is a struggle to not let this hardship and the pity and the bitterness I feel eat at the very depth of my core.
It takes effort to not let negative energy penetrate you and strip you of your happiness and joy.
It is hard not to feel ripped off or resentful.
It is a battle.
A weird, internal battle where you can see that you surrounded by so many people who love and care about you, yet you still feel so completely isolated and deeply alone.
You wonder, “Does anyone even ‘get’ the magnitude of this?”
You don’t ever ask because you already know they don’t. They can’t possibly. You take some peace in knowing they never will.
But the struggle is even harder when you try to explain and find the words.
Because, there is no explanation for things you, yourself, don’t even understand.
There are days when you wonder if the fight is worth all the effort you put in.
You know yourself better than anyone and you can feel what is happening.
You are breaking. Slowly.
Your patience is wearing thin.
The pent up frustration you have chips away at you and fragility surfaces. You wear emotion on your cuff. You feel things you’ve never felt. Your feelings can catch you off guard.
You begin to fear what you are praying for.
Yet you still pray.
You pray, every moment, of every single day simply because you don’t know what else to do.
Some days you feel like prayers are useless and fall on deaf ears. More often then spoken in the cancer world things get better and then just as quickly they get worse and life feels like it is flipping you the bird.
Your efforts feel wasted. You look at you child and wonder how fair the decisions you are making really are.
The chemotherapy is now taking such a toll on Logan. Her blood pressure is still very unstable, she’s had another seizure, she is rapidly losing weight and has had to start daily NG feeds again. The intensity and pressure of her headaches are increasing and cognitively she has continued to decline. We have another MRI coming up and although the last one (only 3 months ago) showed improvement, I worry, she has regressed.
Mornings are a really terrible time for her and there are days when I feel like nothing we are doing is moving us in the right direction.
Sometimes, I feel like picture I am painting for the world (and for myself) is not always the truth of our situation.
This leaves me conflicted.
Because the truth is, most of the time our life is a giant mess with fleeting moments of extreme goodness.
It is intense yet jammed up like rush hour traffic. Energy wanting nothing more than to move forward yet forced to be completely stuck.
I wake up after each restless night ready to face the torture of another day knowing accepting the unacceptable will be inevitable. Life is all about adjusting expectations and rolling with the punches and making the best of it.
I am tired of making the best of it.
But as hard as my life is, my kid’s life is harder. I am constantly reminded of this.
So, I suck it up. I feel guilty about my own pity and try to make this life super awesome for her and Brody and Jared.
That is what mom’s (and dads) are supposed to do, regardless of the shit, right?
It is the job we unknowingly sign up for. It is the dark side nobody tells you about parenting. The moment you have a baby, your life is never really about you again.
The truth is….
I have never felt more stuck or unsure in my entire life.
I should be better at this.
I thought hypothetically, if cancer ever happened again as a mom I would have it cooked and handled.
I thought somewhere inside of me, being a cancer mom vet would protect me from the pain of it all.
I thought exposure would make me an expert.
I learned there is no truth to my thoughts or expectations.
I am not better at this.
In fact most days I feel like I totally suck at it.
I feel like I am barely hanging on.
I wonder every single day why I have been chosen for this impossible task.
I think about my own, eight year old, carefree self and all the hopes and dreams I had for my life and I feel so broken to think of the possibility and ignorance I once felt.
This can’t really be it, can it?
In a quest to have it make sense, I spend so much time in contemplation, therapy and in search of a meaning. I read so many books.
Mostly, the work I do on myself and the things I learn only make me feel more lost.
Go figure.
But I do know this is not my story. It is just part of the process.
I know, although I may not always display it and despite what I tell myself, I am a better version of who I used to be.
I am not any worse than I think I am, I am just really hard on myself. I always have been.
It is a lifetime pattern of beating myself up and an unrealistic perfection complex that is now amped up by wanted desperately to save my child’s life and cure her from this horrid disease but knowing it is totally out of my control.
There is no road map, or instruction manual. We are all doing the best we can.
I draw strength from Logan and she truly is the guiding light for this whole family.
Experience, knowledge, and education doesn’t mean shit on a cancer journey but it really does mean something in the whole scheme of life.
This journey (god I hate that word) helps you get better at being the person you want to be, it has nothing to do with being a better cancer mom.
You take less shit because you have no space for it. Your circle gets smaller but the people in it are super rad and you make decisions based on what you want to do right now instead of living in the past or waiting for the future.
You start to feel everything so very deeply and you get better at saying yes when you can and no when you can’t.
You get to be the recipient of people’s kindness and love and compassion.
No one should have to do this four times and going through it time and time again doesn’t make you stronger. It exposes you but that exposure doesn’t always give you the perspective you need and exposure doesn’t make you more equip to handle what you are forced to face.
Cancer doesn’t give you much but the journey through it does.
It teaches you endurance and it makes your search for happiness and purpose that much stronger.
Struggle shapes you.
There is no sense to things that don’t make sense.
Period.
There are things in this world that we can’t begin to understand and there are things in this world we shouldn’t even try to.
We aren’t meant to understand everything.
I don’t know alot for sure, but I do know life is a process bigger than anything any of us have control over.
I believe we might have to do this many times over to figure out the master plan for our own little souls so I think the right thing to do is focus on the good while we are here.
This is why I have a hard time feeling sorry for myself, or Loggie, (although I desperately wish she didn’t have to be in pain) or for my family, because there is still so much good in this life, in our life.
And because of this, I think I have a responsibility to focus on that good.
Humanity.
Hope.
Possibility.
Kindness
And
Choice.
When you say (and you feel) “My situation sucks, but my whole life doesn’t….”
There is power in that.
Logan taught me this.
She hates having cancer but cancer has never had her. She is gracious and graceful and she is hopeful and she is thankful and she at peace with it all.
It is why goodness always seems to flow towards her and as a result towards all of us as well.
Gratitude is not writing in your journal. You may have to start there and use it to keep you on track but gratitude is not about looking out at your life and saying a verbal thank you.
Gratitude is about looking inward and thanking yourself for being strong enough, aware enough and enlightened enough to recognize possibility and opportunities and good people and then use the energy you have inside you to create more goodness.
I post so many good things to the world simply because I want more goodness to flow into our life.
Not because cancer is a fucking breeze.
Not because I feel like an inspiration (I am always caught off guard when people say this to me. Do any of you know how much wine I drink?🍷😳😉) and not because every single day I don’t realize there is going to be another set back we have to face.
I do it intentionally.
I send out what I want more of.
I have come to learn that struggle is sacred and sometimes we have to face the really hard shit alone, and when we are strong enough to understand it only then can we release it out into the world and ask for support we need.
P.s. It will show up.
The same way all of you have somehow showed up and are now connected to our family and our story.
And if you have any doubt just look below at this beautiful smile and know…
Goodness happens despite the shit.
Every. Single. Day.
We are continuing to hang in there,
#rollwithit
❤️
J
I can’t, for even one moment fathom what you and your family go through every moment of the day, but I do know that you are all amazing and inspiring. Your love,strength,humour and wit shine like the brightest star on the darkest of nights. Logan you are amazing! Prayers and best wishes to all of you on this journey
I think your family is beautiful and you are amazing. I pray for your sweet family because I can not imagine how difficult it really is for you. Life can be so hard and it seems to unfair to see children suffer. I do believe there is purpose to all the struggles this life throws at us, we just won’t fully understand it in this life. But for now I just wanted to share with you that I think you are doing an incredible job and I can feel the love you have for your family and your sweet daughter. Sending you love and strength. Xo
This message warmed my heart. Thank you ❤️