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.


  1. As a parent of two children with complex diagnosis, this post really resonates with me. Thank you : )

  2. Wow, thank you for sharing this. I don't have any idea what you go through, so I won't say that I do. Just that I sometimescannotatio worrying about my reasonably healthy childand don't know how I would function if she were to have a lifelong illness. I suppose I would learn how, but I also imagine a lot of other things would fall apart. If I can ever do anything for your family let me know.

  3. A friend of mine whose son has cystic fibrosis & I have had a similar conversation with each other. It's one of the reasons she & I have become so close. Although Klaw has a very different disorder with different challenges, we have a common point of understanding, camaraderie.

    Raising a child with a chronic medical condition is tough. It's overwhelming and it can be very isolating. Patience wears thin the umpteenth time you have to explain that your child will never be "cured."

    I'm grateful that, as of late, I've been getting "good" news about Klaw. Part of me is always waiting for the shoe to drop, though...wondering if the next hospitalization is just around the corner.

    Thank you for sharing this.

  4. My heart goes out to you. I over-worry about my sons as it is without having something definite with a huge long name that my fears can fasten onto. I seriously don't think I'd be able to cope. It sounds exhausting.

  5. I've had to deal with my son having NF but its always taken a back seat to other health problems.

    Today we were talking things over with his consultants at the hospital and one of them turned around and said "with everything else we have to remember the NF and not forget about it".

  6. Dara - I am in awe of you, but you already knew that. I think you are an amazingly strong woman and an inspiration to everyone.
    You put all the 'little' things into their true perspective, and I thank you for this.

    LCM x

  7. I thought I had problems to deal with, but NF just sounds terrifying. This really tells it like it is, thank you for sharing x

  8. I'm not really sure what to say, you're an awesome mum and an awesome lady. I can't even begin to imagine how I would (or wouldn't) deal with such a terrifying disease, I dare say no where near as well as you. xx

  9. Dara, I wish I could reach out and give you a big hug right through the computer. One thing I've realized since becoming a mom is that the worst thing ever is when your children are sick and you can't make them well. We've had some bad scares, but nothing like NF. I'm so sorry you have to deal with this.

    That said, I also wanted to way how much I admire your strength and courage. Thank you for speaking out and raising awareness. I'm sure these posts are incredibly validating to lots of parents who've had to struggle with kids who have chronic illness.

    Love you, sweetie. So very very much. I love you.

  10. I read this on the ctf website. I considered hugging my computer when I read it, in hopes you would feel it from afar.
    That's EXACTLY what it feels like! And with a daughter who has NF along with other medical conditions I have days where I think I might literally be going insane.
    Thanks for writing so truthfully and from the heart, and thanks for sharing it with the world so that more people are aware of NF. :)



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