Yes, your beautiful baby boy has a brain tumor. The neurosurgeon will tell you he can get it out and then you can go home and heal in about a week. But he doesn’t get it all, and you won’t go home in a week. It’s not going to be an easy road. Things aren’t going to go back to normal — ever.
The quicker you accept this, the faster you can find a new normal. The days following surgery will be almost unbearable. There will be seizures and EEGs and CT scans and MRIs and lots and lots of meds. And very little sleep.
There will be doctors you love and doctors you hate. There will be nurses you love and others … not so much. Research everything and don’t ever stop asking questions. He’s your child and your responsibility. Become the expert.
You will miss and worry about your daughters and husband so badly it will physically hurt. They will be fine. Your husband will take care of things you never thought he could. Give him more credit.
The girls’ teachers will be in awe of their strength and ability to carry on and perform each and every day in school. And your community and circle of family and friends desperately want to help. Let them. People are amazing.
There will be those special few, though, who are just there for whatever you need. To sit and just be quiet. To not ask too many questions. To help carry the load when you miss work. To not give advice or tell you that everything happens for a reason or God only gives you what you can handle. To say, “This really stinks. How can I help?” Appreciate them.
Having a medically fragile child can be overwhelming, but it does get easier. You will settle into a routine. Support groups are out there. These moms will save your life. Find them.
Gain perspective. You know how you get stressed about dog hair on the hardwood floor, overflowing hampers and dishes constantly piled in the sink? Forget it. Embrace the mess and find all the joy and laughs you can in each and every moment. You and your family deserve it.
The New You
The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about?Check out our Submit a Story page for more about our submission guidelines.
You remember my Tyler. I can’t imagine how you could forget him, or me. It was Super Bowl Sunday 2015. It was snowing. We were in our second week post-brain tumor resection where Tyler lost function of his pituitary gland. The diabetes insipidus was sending his little body’s sodium levels all over the place. When his sodium level was too low, he was lethargic, confused and even seized a few times.
The first two seizures were traumatic. I learned quickly how to read the signs and symptoms of a declining sodium level in Tyler. When I returned this day in February after a quick visit home with my daughters, you came to me with a plan.
“We are going to try not to intervene as quickly today to raise or lower his sodium levels because his body needs to learn how to do it on its own.”
I knew already that he felt best when his levels were around 130-135. The seizures happened when he went into the lower 120s. When I expressed my concern, you promised that if his sodium level went below 124, you would intervene to prevent another seizure.
An hour passed and the symptoms of a declining sodium level presented themselves. Tyler was barely able to sit up, keep his eyes open or talk to me. The nurse checked his sodium level every half hour, and it was dropping. She called you. No answer. We waited a little longer. Sodium level was at 126, and symptoms were worsening. She paged you. No response. We waited again, trying to make Tyler as comfortable as possible. Fifteen minutes passed, and the sodium level came back at 124. She paged you one last time before his body began to stiffen and his eyes fixated on the ceiling. She waved oxygen under his nose in hopes of bringing him out of the seizure like the two times before. His jaw only clenched harder and his limbs started to twitch.
Other nurses and respiratory therapists rushed in. You were still not there. Five minutes into the seizure… five minutes… you came rushing in to save the day. Pumped him full of Ativan to stop the seizure and stuck a tube down his throat because he was deprived of oxygen. After seven minutes, the seizure began to let up. I watched helplessly as my baby lie there intubated, almost lifeless, from something you promised to prevent. Your only explanation to me was you were “on a call with another physician.”
At the time and for several months following, I had feelings for you I had never experienced. Hate. True and deep hate. There are lots of things in this situation no one has control over. But this one thing? We did have control over it. And you were on a call with another physician. While my baby was fighting for breath.
But now, a year and a half later, I look back and realize I should actually thank you. I thank you for opening my eyes. Before those seven minutes in the PICU with you, I was afraid to ask questions. I was afraid to demand what my son needed. I was afraid to trust my gut, maternal instincts, always thinking the doctors knew better.
So, thank you.
You made me a warrior, tirelessly advocating for my son day in and day out. I will never stop researching and asking questions and demanding his needs be met in the best possible way. Thank you for breaking your promise.
The Mighty is asking the following: Write a thank-you letter to someone you never expected you’d thank.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.
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 hardestresponsibility 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!
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.
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!”
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.
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.
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.
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.