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Stories of NF: Hyper Aware

By May 4, 2011December 5th, 2023Awareness

Ed note: During May, NF Awareness Month, we are posting stories of individuals and families living with and overcoming the challenges of NF.  If you’d like your story to be featured please email with an article of approximately 500 words, and your picture (or your family’s picture). If you like this story please share it with your friends and family via email, Facebook, Twitter etc. Together we can do wonderful things to promote NF awareness and research, thank you for your commitment to the cause.

The following is republished with the permission of Dara Squires of Readily A Parent.


May is Neurofibromatosis awareness month.
Which is kind of ironic for those of us living with NF – either as people with the disorder, or as parents of children with the disorder. The fact is, I’m always aware. It’s like a tickle at the back of my throat. Even when everything is going great and we have no worries, I’m still aware. Aware that everything won’t always be great; worried that things aren’t as they seem.
This week Emerson has fallen off his tricycle and skinned his face; he has gotten into the knife drawer and put a handy gash in his finger; he’s fallen and jumped off of more chairs than I can count. He’s a boy. Almost three. He will get hurt.
Yesterday another mom told me she admires my calmness when he is hurt. How I can take charge and take care and not turn into a sobbing mess.
But let’s face it, gashes and fat lips, even asthma attacks and hives – they’re pretty easy to take care of. There’s a branching tree of decisions you can make: is this serious; can I take care of it myself or should we go to the hospital; should I use a bandaid or a gauze pad; etc. etc. etc.
Neurofibromatosis, on the other hand, has no orderly decision tree. For three months Emerson has been limping off and on. A couple of days his speech has been slurred and his balance seems off. Tired? Maybe. Brain tumour? Possibly. Spinal cord tumour? Perhaps. Plexiform tumour in his leg? Might be.
And we mention it to the pediatrician, and we mention it again, and we mention it again. But until he’s limping every day for several days she doesn’t really care.
But I care. Everytime I see him limp I search for the decision tree and instead I find the disaster scenario. You know the one. The one that reads: He’s got a tumour on his spine. One morning I’ll get him out of bed and he won’t be able to walk. They won’t operate. If they do it’ll come back. We’ll do radiation. How are we going to afford the trips to the hospital? I need to find more work. The house is going to get a lot messier…..
Typical mom thoughts, right? Or not. Not for those with “normal” kids.
Neurofibromatosis is not something I think about every moment of every day. But it is something I think about every day. At least once. Changing his diaper I notice new spots. Watching him sheild his eyes from the sun I wonder if that’s a symptom of an optic glioma (memo: ask Google). Calling to schedule and resechedule and check up on results of tests and appointments. He gets a pimple or a hive and I mark it in my memory to check for later. Because if it’s still there next week it’s not a pimple or a hive but a neurofibroma.
Sometimes I think about it so much that I forget my other children don’t have it. When Harrison seems particularly obtuse in learning a new subject I remind myself that kids with NF have a higher incidence of learning disabilties. When Teaghan complains of her stomach hurting again, my first thought is stromal tumour. Those are on the days when I’m tired. When I’ve been on the phone with more doctors. When I forget where I’ve placed my coffee ten times in a row and we’re only an hour into the morning. Those are the days when I can’t keep the kids names straight, let alone keep their disorders straight.
I am always aware of NF. It’s a part of our lives. Its the shadow under which we live, but it’s also part of the glue of our family. It’s a large part of what’s kept me at home; it has made me new friends; it has led to me being able to support others as well.
And it’s made me acutely aware of the suffering of others. There are times, yes, when I see or hear another parent complaining about their child’s asthma or allergies and I think – God you don’t know how good you have it. But that’s just on the really bad days when I’ve been climbing the disaster tree. Most days I can react with the knowledge and the certainty that they’ve got shadows and glue in their family too. And sometimes I can help, with support or information. And sometimes all I can do is say “I know how you feel.”
I wish I didn’t. But I do.
Awareness? We’ve got plenty. But the world out there knows so very little. It’s hard to imagine that something that consumes our life so totally is a word that many people can’t even pronounce. And I know there are other parents – with kids with NF or kids with other disorders and diseases – who feel exactly the same.


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