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.
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.