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.


Why I Won't Be Celebrating Bin Laden's Death

A man is dead. Most of "us" would not say he was a good man, but there are many of "them" that will. Regardless of what kind of man he was, or perhaps intrinsically because of the kind of man he was, there will be an aftermath to his death - of that we can be certain.

Many are celebrating. I will not.

Why not?

1. "Vengeance is mine, I will repay, says the Lord." Romans 12:19
Had he been killed ten years ago, when he remained an imminent threat after his declaration of personal war against Christian nations, it would've been an act of war. Killing him ten years later is an act of vengeance only. What has been accomplished? Will it bring back the dead? Will it end the fighting? No. I think we can agree that in actuality nothing has been accomplished by his death - other than the American government finally carrying out their threat to kill him.  His death now is an act of vengeance only. As someone who doesn't believe in the death penalty (though trust me individual cases stretch me on that) I can't support killing even world enemy number one.

2. "If your enemy is hungry, feed him; if he is thirsty, give him something to drink; for by so doing you will heap burning coals upon his head. Do not be overcome by evil, but overcome evil with good." Romans 12:20-21
Ours is not the first generation to be torn by religious fanatacism. Many religions were born of war; many religious leaders were military leaders. It's a story as old as time. And the Bible is full of it.  While it's not The Art of War, the Bible contains plenty of insight on how to defeat enemies. Again, what his Bin Laden's death accomplished? I said nothing, but that's not true. What it's done is created a likely rallying point for others of his ilk. One man has fallen; ten will take his place. Have we forgotten the crusades? Do we neglect to remember Christianity's birth by blood onto the world scene? Although we don't remember the names of any of the leaders of those battles, their death surged the soldiers of Christ forward even more. To them the enemy was not a person, but a lamb set for slaughter.  Religious fanatics believe they are serving as the hand of God. Reacting with further violence, especially directed and targeted violence will not slow them. It will only incite them further. Showing them God's will in us, however, may serve to give them pause before the killing blow. If we concentrate more on building schools, providing aid, and atttempting to understand the place from which our enemy is coming we have the ability to cut off fanatacism before it starts. There will always be lunatics in the world and God will always be used as an excuse for evil, but the power behind an individual lunatic lies in his ability to persuade others that he is acting as the hand of God. The ONLY way to prevent that is to offer an alternative view of God's work - to feed the hungry, quench the thirst, and overcome evil with goodness.

3. It's not over
Why celebrate the end of nothing? Bin Laden's death has ended his life, and a small part of the American military schedule. But it has not defeated Al Queda and it will not prevent future terroritic acts. I fear it will have the exact opposite effect. What is there to celebrate? Are you feeling at peace today? Do you feel safe and secure because of one man's death? If so, I envy you.