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.

Find this story helpful? Share it with someone you care about.

Related to Brain Tumor

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 [...]

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. [...]

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 [...]

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 [...]