To Those Who Think I'm a Super Mom Because I Care for a Child With a Brain Tumor

After my daughter was diagnosed with a brain tumor, everyone started commenting on how strong I am and what an amazing mother I am. Some days those compliments are encouraging, but on many other days, they just feel like a lie.

I’ve often said that whatever your hardest responsibility as a mom is, it’s still valid and it’s still really hard. My hardest days might look harder to you, but in reality, we all experience things on a relative scale to what we already know.

Before my daughter was diagnosed with a brain tumor, she had only had well-child visits at the doctor. However, my son had pneumonia twice when he was about a year and a half, and both times resulted in ER trips. Those ER visits were a terrifying blur for me. My heart still aches as I remember holding him while they tried to start an IV. It was the absolute hardest thing I had ever experienced. Ever.

Now when we have to go to the ER with my daughter, I come in like I own the place. I walk to the desk and tell them we need to go straight to a room because she has a compromised immune system. When the nurse comes in, I give her the specifics on my daughter’s port, the best supplies to use, how to hold it and her to get it on the first stick. I ask for toys, drinks, snacks — whatever I want. It’s as if I’m some A-list celeb who can make outrageous demands. I don’t fear the hospital anymore because it’s become a comfortable place.

I’ve taken my daughter to the operating room 12 times. I have slept on a blue vinyl pullout couch/bed more nights than I care to remember. I have held my daughter while someone put stitches in and when someone took them out. I’ve had to give her medicine and give her injections. I’ve been trained on how to maintain a PICC line, a port and a feeding tube. I have been covered in vomit, blood, urine, poop and cerebral spinal fluid. 

But it’s all relative.

To those who think I’m a super mom and think I’m doing something you could never do, let me give you a list of my limitations:

1. I can’t volunteer in my kid’s class.

There are too many kids. They’re very loud, someone has a runny nose and, quite frankly, I’m scared.

2. I can’t do Pinterest.

Any of it. Baking, crafting, decorating — none of it. When someone shares a Pinterest idea with me, I just shut down.

3. I can’t juggle multiple kids’ schedules.

Last summer, my son took swim lessons two days a week, and my husband had to take him because I couldn’t remember that on top of my daughter’s busy schedule. I don’t know what I will do if they both decide to become active!

4. I can’t plan a birthday party. 

My son turns 5 on Monday, and his party is tomorrow. I verbally invited a few people this week, and today I gathered some generic party stuff. Know what the theme is? Birthday party.

5. I can’t clean my house.

I’m a stay-at-home mom whose house looks like a bachelor lives here. I wish it wasn’t so messy. I just don’t know how to do it. Seriously, I just move the mess from one room to another or sometimes from one counter to another.

6. I can’t make plans.

I would love to have people over — the kind of people who overlook my messy house — but I just never invite them. I would love to have a girl’s night out, but I never think to plan one. I would love to have play dates, but I need someone else to plan it.

We all have things we don’t think we could ever do. Often, we just hang up on those things and forget all the awesome things we can do.

So, to the mom who has medically fragile kids, I salute you, Super Mom!

To the mom who is the room mom, I salute you, Super Mom!

To the mom who has more kids than hands, I salute you, Super Mom!

To the mom who has lost a child, I salute you, Super Mom!

To the mom who is still in pajamas, I salute you, Super Mom!

To the mom who sings “The Hot Dog Dance,” I salute you, Super Mom!

And, to all the moms who are surviving this thing called motherhood, I salute you, Super Moms!

Follow this journey on Hope TIL There’s a Cure.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


What I Really Think When People Say My Son With a Brain Tumor 'Looks So Good!'

Tyler had brain surgery to remove a tumor called an optic nerve glioma a little over a year ago. He lost sight in his right eye and lost all function of his pituitary gland. He is adrenal insufficient, which can be life-threatening when his body is under stress or sustains an injury of some sort. He has diabetes insipidus, which means his body can’t control its water balance, so he takes medicine several times a day to prevent complete dehydration. He is not producing any growth hormone and has not grown in over a year. He is undergoing chemotherapy treatments to protect the good optic nerve from the regrowth of the tumor that is now inoperable.

“But he looks so good!”

In our small community, Tyler has become a bit of a celebrity. It takes hours to get through the local grocery store when he is with me because everyone wants to stop and talk to him and see how he is doing. I appreciate that. I really do.

“But he looks so good!”

little boy in glasses holding up a small toy
Jonelle’s son, Tyler.

This comment I hear over and over again. At times, what I actually hear is, “It’s really not that bad,” or “He’s fine.” It doesn’t really make me feel better that on the outside, Tyler still looks like the perfect little man he has always been. His big brown eyes melt hearts. His new Clark Kent-ish glasses are always a hit. His round cheeks with that little dimple make his smile contagious.

But I still lie awake most nights wondering what the future holds for him. Will he ever be able to drive a car? Will he be able to live on his own? Can he go to college and enjoy a meaningful career? Will he be healthy enough to find someone to share his life with? Will he ever be able to go more than three months without an MRI to check on the tumor? My baby boy still has a life-limiting, at times life-threatening, condition that — even though he may not know it — has had me fear for many of the dreams I had for him from the first moment I held him six years ago.

But, each and every day I make the conscious choice to be thankful that “he looks so good!” And I focus on the things he can do rather than obsessing over his challenges.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

The Things I Cry About as My Son Copes With an Inoperable Brain Tumor

My son, Tyler, was almost 5. Smart, sensitive, kind, generous and (I know I am biased) gorgeous on top of all that. This kid was obviously going to do something great someday. Math scholar, student council president or starting quarterback, I knew he could be anything in the world he wanted to be. And I would help him every step of the way.

Jonelle Cavill’s son, Tyler
Jonelle’s son, Tyler.

Then a failed vision exam in preschool.

First, I cried out of guilt. How did I not know that my child couldn’t see?

Next I cried because he may have a lazy eye and have to wear a patch. What if kids make fun of him?

Then I cried because no one knew what was causing the vision loss, and he would have to be put to sleep for a 90-minute MRI to find out.

I cried next because there was a 4-centimeter suprasellar mass pressing on my baby’s brain and optic nerve, and we would be admitted to the PICU immediately.

When they wheeled him off to surgery, I cried because the doctor was going to crack his beautiful head open and suck out the tumor.

“Unfortunately, the right optic nerve had to be severed,” the neurosurgeon said. And I cried.

I cried when he came back from surgery looking like a mummy.

Then I cried when he had his first seizure.

And the second seizure.

And the third seizure.

When they stuck a tube down his throat to help him breathe and a tube in his nose because he hadn’t eaten in a week, I cried.

I cried when he tried to talk to me and smile at me despite all the tubes.

When he was begging me for a drink and I couldn’t give him one because I had to restrict his fluids to regulate his sodium levels, I cried again.

I cried when he woke me up every 15 minutes to go to the bathroom — all night long.

The oncologist told us the pathology of the tumor was benign and I cried.

I cried the day we finally got discharged because I would now be responsible for all of this.

When he got tested for all sorts of rehabilitation and amazed all the therapists by needing almost nothing only weeks out of brain surgery, I cried.

I cried the day he went back to preschool all blown up from steroids, and his little friend asked the teacher, “How come Tyler got so big?”

When I returned to work and a colleague was talking at lunch about how stressed she was because her son was getting his driver’s license, I cried because Tyler may never have that option.

When I sent him in for the follow-up MRI, I cried. How many more times do we have to put this child through this?

Looking at the scans with the neurosurgeon and seeing the regrowth of the tumor, I cried.

Walking into the oncology clinic for the first time, I cried.

I cried when he woke up one morning and his hair was covering his “Toy Story” pillow case.

I cried as he writhed with pain in his belly and was unwilling to eat even one strawberry in a day’s time.

When the scale revealed he lost 10 pounds and sometimes he was too weak to climb the stairs, I cried.

And when the endoscopy nurse trained me to give a Solu-Cortef shot to save his life if he went into adrenal crisis and warned me to be careful not to hit the bone in his little thigh, I cried again.

I cried when he had an allergic reaction to the chemo that we just found out was working the day before.

He only knew 14 out of 26 letters of the alphabet in the first weeks of kindergarten, and they would pull him out to give him extra help. I cried when he said he didn’t want to go because not everyone in the class had to.

When he gave 200 percent on the soccer field and asked why he still came in last, I cried.

When he came home as proud as a peacock because he was the only one in his class who knew which letters were vowels, I cried.

I cried each time he read his first books with such inflection and pride.

He begged me to let him play basketball on a team with his buddies, and when he got his uniform, he wore it for three days straight. I cried then, too.

At this point, we are about halfway through treatment, hoping to stunt the growth of the inoperable tumor in Tyler’s head. There are a lot more tears on the horizon for this mom, and there’s not much that’s certain about Tyler’s future, except that he is still going to do great things. And I will help him every step of the way, no matter how many tears it takes.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

When a Stranger at the Airport Noticed Me Crying for My Sick Mother

A few years ago, my father called me at my office and said, “Let’s go for lunch.” I had just graduated and was working my first “adult” job. It was exciting and grown-up to say, “I’m meeting someone for lunch.”

At that lunch, my father told me my mother had cancer. They caught it early. Everything would be fine. We cried while sitting on a sunny patio in front of our favorite coffee shop.

A year of surgeries and chemo later, everything was supposedly going well. Mom was on the mend. I moved to South Korea with my husband and became pregnant with our first child. When I was three months pregnant my father called. The cancer had come back — and spread. She now had seven brain tumors. They were treating it aggressively, but no one really knew what her odds were.

When my son was 9 months old, my father called. My mother had suffered a seizure while at home with my teenage brother. She was in a coma. They had taken her to a hospice. I frantically bought two plane tickets and threw clothing into a suitcase. My husband took us to the bus station to catch a 2 a.m. bus to the airport. I spent four hours on a bus hurtling down the highway with an infant. Four hours to sit and wonder what was happening at home. We arrived at the airport at 6 a.m. I spent three hours carrying an infant, a giant suitcase and a car seat. We boarded the plane to Japan for the first leg. I must have looked shell-shocked. I have heard the expression, “Like a dream,” before, but it wasn’t until then that I knew what it meant.

We landed in Tokyo’s Narita airport for a three-hour layover, and it all came crashing down. I collapsed to the floor in the seating area, baby in my arms and wept. Gasping, choking sobs came out, and my son began to wail with me. This was before smartphones and Skype. I had no way of knowing what I was going home to. Was my mother already gone? Did I miss my chance to say goodbye? Was she still in a coma holding on? Was my teenage brother OK? Had my father, married to my mother for almost 40 years, fallen apart?

I sat on the floor and cried for my mother like a child lost at a fair. People looked at me, concerned, but not willing to get involved. After a couple of minutes, an older Korean woman sat down next to me. She gently took my son from me and handed me a bottle of water. She dug through my carry-on and found a diaper and bottle. She changed my son and fed him. She patted my arm and smiled. I didn’t speak much Korean and she no English.

She helped me carry all of my belongings to the plane. She convinced the flight attendants to change her seat so she would be next to me. For the next 13 hours, she kept me together. When we finally landed in Atlanta, she walked with me to the baggage claim and helped me collect my belongings. She stayed by my side as I rushed into the arms of my father and then slipped away.

When my dad asked, “Who was that?” all I could say was, “A mother,” because I knew in my heart that was the truth. She was someone’s mother, and she saw another daughter and mother in distress and helped.

I have never seen her again. I don’t even know her name. But I hope that somewhere she is happy. I hope that life has been kind to her. Because she deserves it.

Sometimes people pass through our lives at the worst of times. They step in and help carry the burden. They are proof that, at its heart, humanity is good.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out ourSubmit a Story page for more about our submission guidelines.

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When I Had to Tell My Son He Has a Brain Tumor

I gauged the impact that the CT scan results would have on my 16-year-old son, Adam. I delayed slicing into the volcanic pie of diagnosis, rarity of the disease, few treatment options, shortened life expectancy and the physical effects. I buried information in a place where only I watched it fester. Cliches told me I would know the right moment to tell him. Cliches (like their cousins, old wive’s tales) are correct as much as they are not. When could the right moment come to tell your son he has a brain tumor?

But it wasn’t my information to keep from him, even overnight. I knew it would change the way he lived, bringing a horror to his childhood that no kid should face — chronic illness and thoughts of mortality. Don’t get me wrong, I wanted to share the burden his pediatrician placed on me, but I was his mom, and I would not relieve myself at the cost of destroying his hopeful way of living.

I didn’t know where I’d find the words, but I was sure that anything I uttered after “you have a brain tumor” would just be white noise. As a mom, I rose in the morning and fell to sleep at night, spending every waking moment protecting my sons’ health, safety and happiness. My message, and these words would rob Adam of all three. The telling was on me.

When I dropped Adam and his brother at school in the morning, I was simply Mom, and while he went through the motions of grade 10, I met with his doctor, who had found a clinical explanation for his rapid growth, joint pain, spotty vision, profuse sweating and sleeplessness. By the time I picked him up, I had become an medical expert on his diagnosis, jumped into the uniform of medical advocate and assumed the role as the official disseminator of information. I became more than Mom because of a phone call, because of an office visit, because of tumor the size of a golf ball.

“I got the results of the CT scan today.” 

He studied my face, and I watched as his eyes widened, big enough to show white all the way around the chocolate-drop iris. Then they glazed in wetness.

He exploded into fist-punching: first on his legs and then on the dashboard. He shook his head wildly from side to side like he was escaping from a swarm of angry bees. Then, staring hard at me, tears streaking his face, he shouted, “No, Mommy,” “No, Mommy” through his sobs. My teenaged son was reduced to the reaction of young child in that instant.

I cried too, more from the guilt of inflicting this on my boy, than from the knowledge of what we were likely facing. With his stricken face and wounded body language, what eye contact I could engage him in begged me, “Say it isn’t true.” He was pleading with me. I was doubled over, the stabbing pain in my belly, my hand resting on his knee

I couldn’t fix this for him, take away the sting or push it to the edge of his thoughts until later. I could do that with a lost hockey game, failed test or harsh words on the playground. That is regular Mom stuff. 

Later, at his bedroom door, I fumbled out, “I’m sorry” and other placating phrases. He could not stir from stillness. He huddled, nestled in blankets and pillows, his lair for swallowing the bad news. It was strange for him to be so silent. He wasn’t a kid anymore.

Mom and her son standing back to back

We still see four sets of expert teams at three different big city hospitals with dreary regularity. The traveling, waiting and testing puts us side-by-side for an entire day, once a week, often more. Adam spends more time with his mother than he might by choice. I worry about what this is doing to his sense of independence. 

As the presence of the inoperable pituitary tumor has made us accept that he will continue to grow (even at six-foot-ten), so it has forced Adam and I to change how we are together. I got “cooler,” learning to respond calmly to his off-color sarcasm. I “lighten up,” while taking on whatever role he needs me to. That means being his admin assistant, getting my hands squashed at painful tests and responding to agonizing questions like, “Do you know when I’m gonna die?” I am medical advisor, advocate, comforter and pal. I am whatever he needs.

Meanwhile, Adam does his best to be patient, tailoring his teasing to be publicly acceptable and making me laugh so the strain of absorbing medical texts, documenting his results and deciding on surgery, radiation and medication do not bring me to a teary meltdown. We are “companions in arms” and “sidekicks,” where we are now. Our relationship has morphed with each doctor, hospital, surgery, symptom and piece of bad news. We have developed our own plan and definition of forever.

It is not my choice that I speak on his behalf in the significant medical meetings with world gigantism experts, the ones who will decide his future. I want him to run his own healthcare. For the most part he could now. Often I’m shushed politely and doctors redirect questions to Adam. He bristles, and replies, “I go through all this crap and she knows about all this crap. That’s how we do it! I have nothing to add to what my mom says. We are a team.” He needs it this way.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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To the Caregivers Who Try to Be Strong Enough for the Both of Us

Halfway through my sophomore year of college, I was diagnosed with a brain tumor. I spent that spring and summer in doctors’ offices and hospitals and bed. My family and friends spent that spring and summer right by my side. For months, I was unable to walk on my own; I lost parts of my vision; I couldn’t sleep or keep food down; I was angry and
was depressed. My family was strong and resilient. So one night, in a hospital bed a week into my longest and most trying stay, I wrote them this letter.

My loves,

It’s been a hard few months for us. We’ve been through a lot, and we have more to come. This isn’t easy, but we are doing the best we can. You are doing the best you can.

Thank you for being by my side. Thank you for every time you’ve held my hand and every time you’ve told me we will get through this, even when I didn’t believe you. Thank you for lying to me when I ask you if I look OK when I’m self-conscious about my bed-head. Thank you helping me up when I’m dizzy but have to use the bathroom. Thank you for pretending you aren’t watching me with held breath and a worried mind when I want to walk on my own. Thank you for lifting my wheelchair in and out of the car a million times. Thank you for the forehead kisses and for holding my hand during every needle or poke or prod. Thank you for driving me around to doctors and errands.

Thank you for loving me the same. Thank you for being by my side.

I’m sorry. I’m sorry you are so tired, which I can tell from your eyes. I’m sorry for the days when I’m irritable and frustrated. I’m sorry for the times I can’t muster up a smile or a good attitude. I’m sorry all we talk about is my health, but I promise I care about your life, too. I’m sorry life isn’t very fun right now. I’m sorry all your free time is taken up by my doctor’s appointments and running back and forth to the hospital. I’m sorry I’m not always myself.

I know this is hard for you. I know I’m not the only one in this fight, and I know you are hurting too. I know you aren’t as sure as you pretend to be when you tell me it’ll be OK. I see you when your eyes tear up, and I know your heart is full of worry; that is OK. You are trying to be strong for me, and I love you for that, but you don’t always have to be. I know there will be days when you are frustrated and tired. There will be days when you do not have enough strength to be strong for both of us; I will pick up your end on those days. We can take turns.

This is going to get harder. I’m going to be scared before I start treatment, but your hugs will help. I’m going to be tired and grumpy while I recover, so you will need your patience. I’m going to be bored and bedridden post-surgery, so I need your friendship and

But I promise we will get through this, and I will get better. And when this storm passes and we find brighter days, I won’t forget you were by my side. I won’t forget every time you made me laugh when I was scared or hurting. I won’t forget the days you spent with me just lying in bed knitting or watching TV or entertaining me when books couldn’t. I won’t forget the hours you spent sitting by my hospital bed or the energy you used to push my wheelchair. And I hope you never face any storms, but we all do, and when your forecast isn’t so bright, I promise I will be by your side.

I love you,

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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