Stop thinking you need to be positive all the time. Stop telling yourself you need to be strong. Stop pretending that all of this isn’t difficult or troublesome or downright terrifying. It’s all of that.
It’s so much more.
Your baby had a brain tumor!
No matter how old they are, your baby is struggling with something no child should ever have to face. And there is NOTHING you can do about it. No great act of love, no large financial donation, no matter who you are or who you know…you can’t go to the ends of the earth to change the fact that your child was diagnosed with a pediatric brain tumor.
Accepting the fact that you have no control of this will probably be a huge struggle to overcome.
It was for me.
You can’t go back and change a damn thing. You can’t fix this. You can’t make it go away. You can’t make things better.
But there is something you can do. There are ways you can help. There are parts of this whole nightmare that can control. Only you.
Start by cutting yourself a break. Why are you so hard on yourself? Why do you think it’s your job to be strong? What makes you think it’s not okay to not be okay?
Stop being so hard on yourself.
Mama now is probably the only time in your life someone is going to give you this advice. Lower your expectations of yourself.
If the only thing you did today was to go to the hospital and sit by your fighter’s bedside
…or snuggle your survivor on the couch in your PJs all day
…or cry on the bathroom floor for hours remembering your eternal star.
If that’s all you were able to do today…
That is enough.
That is honorable.
That makes you brave and strong. That makes you the most amazing mom you could possibly be.
However you faced this day.
Whichever way you were able to show up.
Whether it took every ounce of you just to breath or you took a huge gasp of air and owned the day. Whether you simply stayed alive for another day or you got out there and lived your best life.
Whatever your best was today….
I AM PROUD OF YOU.
YOU are amazing.
Pediatric brain tumor moms, dads, siblings, caregivers, families, friends…we are all a part of this. We are all struggling. We have all had our moments.
If you haven’t had your moments…
I won’t apologize for being blunt in saying that you will. Unfortunately.
While every child’s medical journey is different, there’s one thing makes them all the same. Going through this is hard. It is impossible to be strong and optimistic and faithful and hopeful all the time. That’s one part of this that we will all share.
Whether you’re just starting this journey, planted right in the thick of it, gliding on the road of survivorship, or mourning the loss of the child taken far too early. Going through this is hard. Whether you’re yet to figure that out, just figured it out, or thinking back on everything you’ve gotten through. You can’t show up flawlessly all the time. None of us can. And if there’s one thing I guarantee is that we’ll always share that.
At some point, you won’t be ok.
At some point, you’ll struggle to be optimistic.
At some point, you’ll need help.
You’ll be scared.
You’ll fear the outcome as you hand off your baby to a surgeon. You’ll be filled with fearful anxiety as you sit for hours in a room desperately waiting for an update.
You’ll be scared to hold your baby for the first time after surgery. You’ll be terrified to take them home. You’ll be afraid of what the future holds.
I could never imagine how scared you must be to have to live without your child who lost their battle.
This whole thing is just so scary. All of it.
Pediatric brain tumors are SO scary.
If you’re struggling to navigate the shock of the diagnosis. If you’re frustrated with another bump in the road of survivorship. If you’re angry that your baby was stolen from you way too soon.
If you feel like crap and think life’s unfair and you’re just…
If you are burdened by what if’s. If you’re worried about what comes next. If you’re tired. If you just don’t want to do this anymore…
If you’re dealing with any of those crazy hard emotions…I feel you, girl.
You know…pediatric brain tumors have a way of turning people’s lives upside down and tricking them into thinking they need to be okay with everything that’s thrown their way.
I know that. I fell for that trick.
I thought for so long that being a good mom through this medical journey meant that I HAD to stay positive.
I spent YEARS holding back tears because I thought crying meant I wasn’t showing my son how to be strong.
I bottled up every emotion inside and dealt with it completely by myself. I struggled alone, even though I didn’t have to because I thought being emotional meant I wasn’t appreciative for what we do have despite what we’ve faced.
I pretended that I was strong and positive and grateful all the time because I thought that was what I was supposed to do. I thought that showed others that I was brave. I thought it taught my son to be brave.
None of it did. Not a bit.
Do you know what taught my son to be brave?
…what showed him that I was strong?
…what taught me more than anything these last 5 years?
Realizing. Realizing that I don’t have to be okay.
The moment I realized that, sometimes, it’s okay to NOT be okay was a profound moment in my story.
The moment realized that it’s ok to cry….
When I stopped telling myself that it wasn’t okay to feel weak…
When I stopped telling myself that I needed to be optimistic…
That is when I became strong.
That is when I learned all about being brave.
I’m telling you this from experience
…from years of doing it all wrong
…from the countless days I wasted beating myself up
…from another mom who experienced the exact emotions you’re feeling right now or that you’ve felt in the past or that you’ll feel any day now.
I’m telling you this because I know. I’m telling you this because I never had anyone there to tell me. I wish I did.
You will have days when you simply can’t be positive. There will be days when don’t just feel weak, but you also don’t want to be strong.
You are the mother of a brain tumor warrior.
Your child will make you so incredibly proud and humble as they face this horrible disease. But, you know what? You’ll make them proud too!
I never felt that it was my place to feel anything but tough and courageous during this journey. After all, it was my son who this was happening to.
I didn’t have the right to feel bad for myself. Those feelings weren’t for me to feel.
I was wrong.
It’s true that your child is the one physically fighting this disease, but you’re fighting it too.
It’s your battle, too.
It’s happening to you.
It’s happening to all of you.
Whether you’re the mom or dad or brother or sister or grandparent, aunt, uncle, cousin, boyfriend or girlfriend or friend of a brain tumor warrior
…it’s happening to you, too.
It takes a village to fight this disease.
It takes an army.
Stop thinking you need to be the strongest part of the team all the time.
Sit in the uncomfortable emotions. Tell yourself it’s okay to feel bad. Accept the fact that there will be bad days. Heck…accept the fact that there may be horrible days.
Pretending you are strong. Hiding your tears. Thinking brave means being positive or hopeful. Fighting to stay optimistic all the time…
All of that is so much worse for your warrior than sitting with difficult emotions until you’re ready to get up and carry on.
All of that pretending and hiding will lead you to a dark place. All of that thinking and denying will leave you feeling burnt out.
If you’re doing it that way, you’re doing it all wrong. So, stop. Take a breath and just stop.
Be kind to yourself.
Cut yourself a break for having a bad day.
Why wouldn’t you have bad days?!
It’s totally normal to not be optimistic ALL the time. It’s more than okay.
Let yourself have an “I feel like crap about this and it’s not fair and I’m scared of what comes next” day.
Let the tears flow. Kick. Scream. Yell. Cry. Pity yourself. Question God. Curl up in a ball on the bathroom floor.
Do whatever you need to deal with how excruciatingly hard this diagnosis is.
Then get up.
Brush yourself off. Get back in there.
Pull that chair back up next to your fighter lying in a hospital bed…
Curl back up with that sleeping survivor…
Jump back into that memory of your angel that made you sad…
Show back up for your family. Stand or sit or lay there proudly.
Do it with a new promise. Show up for your brain tumor warrior by showing up for you first. Nothing will validate the saying that you need to fill your cup first than this journey.
Be nicer to yourself. Be more understanding of yourself. Lower your expectations for yourself. Forgive yourself. Give yourself a free pass to have a bad day.
Cut yourself a break.
Then give yourself this priceless gift. Give yourself the gift of knowing that you don’t have to do it all. You’re not expected to do it all.
You can’t do it all.
Pretending you don’t have hard days doesn’t make you strong. You’ll never be brave by holding back the tough emotions.
Being brave means showing up despite the fact that things are hard. You’ll be brave because you were scared and you showed up anyways…
You’ll be so brave!
Stop pretending that all of this isn’t difficult or troublesome or downright terrifying. It’s all of that.
It’s so much more.
You’re doing a great job being optimistic exactly as you are.
With all the love and tears,
From a mom who learned the hard way what being brave is all about
**This article is dedicated to a brave, strong, and beautiful woman who just started her journey as a brain tumor mama. Thanks for reminding me of this important lesson that I often forget. All the love and prayers to surround you, your family, and, most importantly, your warrior through the ups and downs of post-op.