Emily Erion

@emilyerion | contributor
Brain Tumor Momma, Advocate, and keeper of all the things...
Community Voices

The Girl I Grieve

The girl I grieve.

She was not dumb or naive. She was young and hopeful. She was blissfully unaware of just how cruel life could be.

I grieve her often…

The girl who wanted four children. The girl who always imagined herself surrounded by her children and grandchildren. The girl who knew exactly the kind of mother she was going to be. She was going to do it all. Have it all.

Her children were going to win awards and be highly motivated to excel in school just like she was. She was going to nurture all their unique interests. Her life with her husband and children was going to be picture perfect. She did “everything the right way”… finished college, got a job, got married, bought a house, had a baby…in that order… so she deserved the happy ending, right? It’s almost laughable to think about that now.

She was silly to think the world owed her something. The world owes no one, she just didn’t know that yet. I secretly miss that about her. The optimism. The privilege she didn’t know she had.

She was carefree and fun. She wasn’t afraid of anything. She knew having children would be stressful but fulfilling. She looked forward to the challenge and the rewards of parenting.

She had no clue how quickly those dreams could be ripped away. She saw them all go up in flames in one split second. She was gone. She is missed, especially during times of great joy or conversations of more children…  But she had to disappear. She was no longer needed. She could no longer exist because the reality of her life called for someone new to emerge.

I think of her…
Often…on sunny days…
I grieve her.

But I’m okay being okay without her. And he is more than enough for me.

Emily Erion

When Your Neurodiverse Child Is Called 'Aggressive'

I received some gut-wrenching news this weekend. The kind that leaves you sobbing uncontrollably — swollen eyes, angry at the world. I had no idea my son Owen’s behavior had been spiraling at school. According to his school, he’s been “aggressive” to other kids and teachers. He’s being moved to a smaller class. “Regressing.” The word that cuts through me like a knife. It felt like my heart was being ripped from my chest. That’s the thing in this world. The world of having a child with a brain tumor, brain injury, epilepsy, hydrocephalus , ADHD, etc. Within days of hearing “his scans are clear –no new growth,” and celebrating, we are hit with this. Medical stuff I’ve learned to cope with. I’m always prepared for the worst. But the trauma his brain has endured and the repercussions of that are devastating. To have a child who can and does learn, who’s smart and wants to learn, but behaviors and impulses are blocking him from thriving – it’s heartbreaking and earth-shattering. He’s been doing well at home, so I was blindsided. You’d think after every card we’ve been dealt that I’d be a little tougher now… but sometimes things just gut me. I think some of it stems from all the news articles I’ve seen of teachers quitting because of behaviors in classrooms. In almost every article, people worry about their neuro-typical kids’ safety (and I get it to an extent, they should seek safety first) and it feels like they blame parents and technology and everything under the sun, but no one seems to think about the injustice that is the special education system. The one that throws our kids into classrooms without the support they need, the system that fails so many kids. No one seems to mention what the child who’s showing these behaviors must be going through. I’ve seen mothers and people I respect deeply think children with disabilities should be separated… as if our children are unworthy to be near “typical” children. Like they should be contained away from everyone else like some zoo exhibit. Parents who don’t know how to explain our children’s behaviors to their children. Please, parents, now is the time to teach your children compassion instead of teaching fear. And what about the child who has behavior issues because of their disability? What about their parents? They could be a parent like me — one who does everything for their child. Have you ever held your child down for a blood draw without a single tear falling? I have. Have you ever held a mask of anesthesia to your kid’s face while he cried and screamed for it to stop and yelled “Mommy, no, mommy, no” until his eyes rolled back into his head? All without a single tear? I have. Have you argued and fought with a family member you love because they don’t understand your child? I have. Have you smiled and laughed and made small talk with others while your child was having a second brain surgery in a weekend? I have. So the next time you worry about your neuro-typical child seeing another child with a disability become violent, I beg you: teach them empathy. Teach them about the “unspeakable” things that might be happening to that child. Teach them not to fear things they might not understand. Even in the disability community – it can seem like everything is fine and accepted until you’re the parent with the “aggressive” kid. Do you know the amount of sadness you feel when you don’t even fit in in your own community? People seem to be more comfortable with ADHD, sensory issues, brain tumors and “all that jazz” until that same kid shows a single ounce of aggression — then it’s an entirely new ball game. I wouldn’t wish this pain on my worst enemy. I beg each of you when you read a story or witness something jarring, put yourself in the other person’s shoes… could you walk a day in them? What reaction do you wish you would have seen? The day before they found Owen’s brain tumor, I wasn’t a brain tumor mom either. I never thought my kid would be the one other parents’ feared… until he was. My heart is broken. My heart is shattered. I want to give up. I want to run away and hide. I want to hold my precious child and tell him everything will be OK. I don’t want to face a world that won’t accept him. Who won’t take a chance to truly know him. I’m begging you please understand that my child isn’t defined by his behaviors. He is so much more. He deserves people in his corner. He deserves to be seen for who he truly is, not how his disabilities and injuries affect him. He deserves a mom who will fight for him, and that is exactly what I plan to do after I finish grieving all this news. After all, I am human.

Emily Erion

What I Didn't Expect When My Child Developed a Brain Tumor

You never expect your child to get sick. You never expect to hear the words “chronically ill.” You never expect it will affect every single aspect of your life. You never expect it to affect every single part of your child’s body. You never expect it to change who your child is. You never expect people to walk away. You never expect people to step up. You never expect to be totally heartbroken. You never expect to be so strong. You never expect to have to hold your child down during countless procedures. You never expect to pray for a miracle procedure or drug. You never expect that life can contain so much pain and so much joy simultaneously. You never know what to expect. Love, Owen’s Mommy

Community Voices

Giving in to the Gray

When my husband and I became parents the world was pretty black and white. You were either a good parent or not. You were either the parent that went all out or not. I was the mom who always had to have things just so. I made homemade treats, breastfed My youngest son, Owen, for over a year, made cute lunches for my 10 year old, Tyler, put them in coordinating outfits, scheduled play dates, made baked goods, attended every event even at the cost of my own sanity etc.

The world was black and white- until it wasn’t. Until it was all gray. The day your family receives the news that the youngest member has a #braintumors– that previous life and world is gone. And I’ll be honest with you, I’m glad it’s gone. We no longer spend our time worrying about a missing belt or cleats… or if we are late or if ,for no reason at all, we just want to hang out as a family and throw schedules and plans and events to the wind. It’s freeing to let go. To give in to the gray. We like it here.

Maybe Owen’s upcoming surgery will be his miracle but we still aren’t going back to black and white… we are good parents because we love and care for our kids on the deepest level- the one where we aren’t so focused on trivial bullsh*t. I wish every parent could be here (sans the emotional, physical, traumatic, gut wrenching way we got here.)

We don’t have to be happy all the time. We can live with sadness and grief and happiness and joy all simultaneously. It’s okay to not be a perfect parent. Everything doesn’t always have to be just so. It can be a wreck and still be beautiful. I’m glad my kids are watching this journey. They are tougher and stronger for it. They know that life cannot break them. That humans are never really broken even if they feel that they are.

So I’m sorry if you think that we don’t care about our kids because we miss a ball game, lose a belt, show up late for a school event, need a #MentalHealth day, forget things… we just know that those things don’t matter big picture. Life is meant to be lived in the gray areas. It’s nice here… being at peace but also knowing just how close the ground is…

❤️❤️❤️

#owenwillwin #gograyinMay #BTAM

3 people are talking about this
Community Voices

Giving in to the Gray

When my husband and I became parents the world was pretty black and white. You were either a good parent or not. You were either the parent that went all out or not. I was the mom who always had to have things just so. I made homemade treats, breastfed My youngest son, Owen, for over a year, made cute lunches for my 10 year old, Tyler, put them in coordinating outfits, scheduled play dates, made baked goods, attended every event even at the cost of my own sanity etc.

The world was black and white- until it wasn’t. Until it was all gray. The day your family receives the news that the youngest member has a #braintumors– that previous life and world is gone. And I’ll be honest with you, I’m glad it’s gone. We no longer spend our time worrying about a missing belt or cleats… or if we are late or if ,for no reason at all, we just want to hang out as a family and throw schedules and plans and events to the wind. It’s freeing to let go. To give in to the gray. We like it here.

Maybe Owen’s upcoming surgery will be his miracle but we still aren’t going back to black and white… we are good parents because we love and care for our kids on the deepest level- the one where we aren’t so focused on trivial bullsh*t. I wish every parent could be here (sans the emotional, physical, traumatic, gut wrenching way we got here.)

We don’t have to be happy all the time. We can live with sadness and grief and happiness and joy all simultaneously. It’s okay to not be a perfect parent. Everything doesn’t always have to be just so. It can be a wreck and still be beautiful. I’m glad my kids are watching this journey. They are tougher and stronger for it. They know that life cannot break them. That humans are never really broken even if they feel that they are.

So I’m sorry if you think that we don’t care about our kids because we miss a ball game, lose a belt, show up late for a school event, need a #MentalHealth day, forget things… we just know that those things don’t matter big picture. Life is meant to be lived in the gray areas. It’s nice here… being at peace but also knowing just how close the ground is…

❤️❤️❤️

#owenwillwin #gograyinMay #BTAM

3 people are talking about this
Emily Erion

A Letter to My Son's Brain Tumor

Dear Owen’s Brain Tumor, I know you thought you’d steal my joy — the joy of being a mother. God knows there are times when you come close. You drain my son, my wallet, my heart, my time, my sanity…there are days the thought of you consumes me. But, you’ll never take my joy. I know you thought you’d steal my son’s childhood. God knows how you’ve tried. You’ve put him in the hospital more times than I can count. You’ve wreaked havoc on his body and mind. You have caused hundreds of seizures; caused him to need surgeries, countless medications, therapies and behavior issues. I know you thought you’d break my patience with all that, but he always fights back. He’s tougher than you. And he’s tougher than me too. I know you thought you’d break us. That you’d drive our family apart with your endless needs and issues. But you were oh so wrong. You accidentally caused us to form an army against you; an army of therapists, teachers, nurses, pharmacists, doctors, prayer warriors, family and friends to fight you. To be honest, you’ve given us more than you’ll ever be able to take away. You gave us perspective — showed us about what really matters. Like the hour I just spent playing Duck Duck Goose and Hide-and-Seek with Owen tonight. You can never take that from me…from us. You showed me that joy is a choice. To find joy in the simple small things. That quality is worth so much more than quantity. You showed me who my friends are. You showed me how brave I can be. You showed me what a warrior my son is. He doesn’t really understand you yet, but he will. You’ll try to crush his soul like you tried to do to mine, but what you didn’t realize about us is that we are fighters. God’s got us…and you…you can’t ever change that, nice try though. ❤ Owen’s Mommy