This past Saturday on a long run, I passed a derelict building that blemishes an otherwise lovely running path I frequent near my home. The shattered windows form an atlas of some long-forgotten land. Weeds and grass have started to reclaim the surrounding pavement. Jagged half-walls mark the former outline of the building. Taggers have come and gone, leaving various shades of spray paint on any available surface.
Jogging by, two words jumped to the front of my presence from a former second story room. The first, in large, flared, urban, perhaps gang-like style, read SHOCK. Another, much smaller but still quite legible, in thin, block lettering, proclaimed BELIEVE.
SHOCK. This is a common emotion for me in my journey as a mother of a child living with NF. At his MRI scan in March, we discovered that he has a very small optic glioma, a benign tumor on his right optic nerve. This may or may not grow. It may or may not affect his vision. It may or may not become malignant. We have no way of knowing. Once an NF patient is shown to have a tumor, he or she gets on a regular consulting schedule with a pediatric oncologist, even though he or she may never develop cancer. Just in case. After viewing his scan, our oncologist determined that his tumor was too tiny to need any treatment for now. We would re-scan in 6 months and see if it has changed at all.
Well, tomorrow is Benji’s 6 month re-scan. A word I have learned since my son’s diagnosis is the term “scanxiety.” This is a real condition, which is the feeling of extreme stress and worry over your child’s MRI until the doctor tells you what he or she sees in it. Despite the fact that the rational side of my brain knows the chances of anything changing drastically in six months are small, I still have moments of worry that it has suddenly ballooned to the size of a golf ball or larger. I worry that every little stumble, any slight wink in his expression might be a sign of a new tumor. I worry about having to watch my son go through chemotherapy to shrink a dangerous tumor. This is the main treatment for a tumor deemed to need it, whether it is malignant or not. There are people working on less invasive, more effective treatments, but these are not yet widely available. So we wait.
BELIEVE. The funny thing about scary stuff is that it makes you really see how strong you can be, if only because you want to hold it together for your kids. My boys don’t have much idea about what’s going on with Benji medically. The older two have been told he’s small for his age and he might take a bit longer to learn to do things like walk and run. But they still adore him and treat him like they always have. It’s just their parents who try not to lie awake at night worrying whether Benji will have a normal life.
But I believe. I believe in the expertise and genuine care we’ve found at Children’s Hospital. Every person we have worked with there has been extremely kind to Benji and patient with our concerns and questions. They have always made all of us as comfortable as possible.
I believe in the power of prayer. I lifted Benji up before his scan in March and my congregation celebrated with me when I told them his scan turned up the smallest possible result short of nothing. I hope to be able to share more good news next time. I do believe that whatever happens, our church family is behind us and rooting for Ben.
I believe in the strength of our family. Our parents (Benji’s grandparents) have been amazing and supportive from diagnosis to now, and our extended family also sends loving vibes from afar. Bill can make me smile in any situation, and I feel certain he’ll work his magic again at least once tomorrow.
I believe in Benji. He is an amazing child. He has come so far, much faster than anyone expected. He is nearly running when he didn’t really take independent steps until mid-May of this year, at nearly two years old. He has met nearly all of the gross motor milestones he has been chasing for months. He has a large vocabulary and will show it off at any opportunity. He has the world’s best laugh and pat-pats. He loves songs and he plays the kazoo. His temperament is so sweet, he is rarely upset or sad. His most common expression is “okay, Mommy!”
I believe that no matter what may be ahead for him, Benji will meet it with a smile.
And we’ll be smiling with him.