A day in the life with neurofibromatosis

Dara Squires newsroom@thewesternstar.com
Published on May 21, 2014

My youngest son will soon be six years old.

Today, I sorted through some of his clothes, hoping to eliminate some outgrown stuff.

The thing is … he hasn’t outgrown any clothes in almost two years. I don’t remember the older two going so long between growth spurts.

I made sure what I kept was the soft, smooth clothing as he’s been complaining “why am I always itchy” in the mornings.

I use only hypoallergenic detergent, soaps and shampoos, so soft clothing is just an extra measure. His sister is pretty sensitive too.

Tonight I will work with him on his writing. His penmanship leaves a lot to be desired and the act of writing itself seems to confuse him.

His brother still can’t write legibly either, though. Although his brother also struggled reading at his age, he’s now a strong reader.

Maybe I have nothing to worry about. Maybe he just hasn’t hit his growth spurt, is sensitive like his sister, a different learner like his brother. Or maybe he’s experiencing stunted growth, itchy skin, and learning disabilities — all symptoms to be expected given his condition.

My son has neurofibromatosis Type 1 (NF-1). And we are lucky.

Not lucky that he has the disorder, not in any way. But lucky in that all of his symptoms right now are maybe neurofibromatosis and maybe just normal quirks of a growing boy.

Friends have children who aren’t so lucky — they have optic and brain tumours, tibial dysplasia (bowing of the leg bones that requires multiple painful surgeries), facial tumours, severe learning issues, severe growth restriction … the list goes on.

For a child with neurofibromatosis-1, the list of possible problems is endless. And for a parent, so is the worry and fear.

Right now, we’re lucky. But that can change. It probably will change. And it’s hard not to think of when and how it will change.

My son leads a normal life. He does well in school, has plenty of friends, is, as he says, “the cute one” and a real charmer. He gets into mischief and trouble just like his siblings. And he’s not embarrassed or ashamed of his “spots.”

The other day my eldest son informed us that his little brother always “looks dirty.” It was like he was noticing his brother’s spots for the first time. He’s entering that age where he’s finally starting to take some interest in personal hygiene and in appearances. I reminded him of his brother’s spots and how we’ve talked about people looking different and that at some time his brother may look even more different because of his disorder.

But when my youngest reaches the age his brother is now, I’m not going to be able to explain all that to every child he meets. When his peers start noticing and commenting on appearances, will his spots still show so much? Will he have developed skin tumours? Will he still be smaller than his peers with a larger head?

Of all the worries that come with his diagnoses, some of my worst are the social ones.

It’s already known that children with neurofibromatosis-1 will likely suffer both learning disorders and social disorders. Add on a “different” appearance and it’s a recipe for bullying and heartbreak.

I guess because I’m lucky enough that right now I don’t have to worry about tumours or surgeries, I’ve latched my worries onto this.

As a parent, I often have to remind myself to let my worries go by remembering that there is nothing I can do — what will be will be.

I remind myself that I’ve been through plenty of difficult and stressful situations and I can face a few more.

But it’s harder when it’s your child who will have to face it. And it isn’t quite true that there’s nothing I can do.

While I always aim to give my child a “normal” life and not make his disorder a part of his identity, I also know that part of my job is to be his advocate and the general public’s source of information.

It’s a lot easier to explain that spots aren’t dirt or a contagious rash or anything to be afraid of or grossed out by when the person to whom you’re explaining it has at least an inkling of the real cause.

And that is why I speak out, why I mention his disorder whenever I meet someone new who asks about my family, why I write columns and posts about it.

It’s not because I truly believe the person listening or reading will do anything about it ... they won’t run out to donate money or personally cure the disorder.

But they will learn something and they will understand a bit more about my son’s peculiarities and his mother’s worries.

My greatest fear is that ignorance will cause someone — a possible friend, a likely girlfriend, a teacher, an employer — to make my son feel like there is something wrong with him. My son is perfect, it’s just his DNA that took a wrong turn. We can deal with the tumours and the issues and symptoms that may arise. It’s a lot harder to deal with ignorance and fear.

May is Neurofibromatosis Awareness Month. Consider yourself informed.

You can comment on this column or access previous editions of Readily A Parent using the following short link: http://bit.ly/DaraSquires.