This is what it's like.
Saturday. 3pm. Jazz class. Emerson says dance class gives him "super jazz power." He makes Jazz Hands when he says this. He's such an adorable little goof, but I worry that the other kids in his class are bigger and seem so much more mature. Of course he is the only boy.
He lays down on the floor in the middle of stretching. Fifteen minutes into the class he's not listening to his instructor, pretending to fall asleep. Finally he leaves.
I don't know whether he's goofing, accidentally hit his head, or if this is something from the NF. Could a brain tumour cause this? Is that why I've been noticing that bulging lump above his eye?
He's tired. And it makes no sense because he got plenty of sleep. And whereas most parents would think "maybe he's coming down with something," as the parent of a child with NF you think "maybe he has a brain tumour."
Sunday. 4am. Despite his exhaustion earlier, he's having a hard time sleeping. He claimed Saturday evening at the grocery store that he couldn't walk because his legs hurt. His legs always seem to get tired faster than normal. And sometimes he limps. And while a big part of me wants to push harder to get an MRI of his lower spine, hips, and legs, a bigger part of me wants to let him just be normal. A normal child with normal aches and pains and tired legs. And a bigger part of me doesn't want to know. After all...there's nothing they'll do if there is a tumour there. Removing it will probably make it grow back bigger.
He's screaming and crying now. I tell myself it's growing pains. A Junior Advil helps him sleep. Nothing can help me sleep.
Sunday. 1pm. "Mommmmmmmy. My leg hurts so much!"
There's nothing there..no bruise, no bump, no lump, no tight muscle. But his leg does look...funny. Like it's kind of crooked. Like it's bowing out. This is the same leg he has ocassionally limped with. The leg that the doctor, paediatrician, and orthopaedic surgeon told me they can find nothing wrong with by looking at it.
Tibial Dysplasia. About 5% of kids with NF are born with it. I was told not to worry - he doesn't have it. But is it always congenital? Is it something that can happen as he gets a little older even though it wasn't present at birth?
I take a moment. Breath. Hit the computer. Reassure myself. It's not tibial dysplasia. And I knew that before I even started to google. But I had to do it or else the worry would have eaten me up.
Sometimes people tell me I worry too much because they see me doing things like examining his body, looking in his eyes, reading medical reports...but these are the things that help me stop worrying.
When I look at his body I see his spots. Yes. And there's a bump on his neck. Yes. And I can picture where the skin tumours will be when he gets older. Yes. But mostly I see this strong, solid little boy with beautiful skin and a posture that's ready to take on the world.
When I look in his eyes I'm checking his pupils and vision. Yes. And wondering when the lisch nodules will appear. Yes. And worrying about the tumour that could be there, ready to pounce, on his optic nerve. Yes. But mostly I see his beautiful hazel green eyes with smiles pouring out of them. I remember calling him Baby Blue Jay when he was an infant because of the startling blue of his eyes. And I try to recall when, exactly, they changed.
When I read medical reports I create mental checklists. Yes. But mostly I wonder at the amazing work researchers and clinicians are doing. And I reassure myself with numbers and percentages and specifics to look for.
When I look at my boy - sometimes I see a boy like any other: a pesky little brother, a sweet-sneaking monkey-child, a cuddle-bug. And sometimes I see disorder and diagnosis and complication. But always I see strength. The strength to bring us all through the marathon of his life.
For more information:
Children's Tumour Foundation - What is NF
NF Canada (now defunct) - About NF
The Neuro Foundation - What is Neurofibromatosis?