Monday, December 16, 2013

What is Neurofibromatosis?

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."

Friday, December 13, 2013

Why $6000

It started with a "rash." My youngest was born with the typical flaky,splotchy newborn skin. But some areas, skin flaked away and underneath the new skin appeared discoloured. Brown splotches showed in strange places. They could've been birthmarks, but there were so many, and they kept coming.

I mentioned it to the Public Health nurse at a checkup. "Perhaps check with your doctor," she said, unable to identify the rash.

So we didn't rush because he wasn't bothered. But a couple weeks later I left the doctor's office ashen-faced clutching a long list of test requisitions and specialist referrals in my hand.

I remember that night sitting at a book club meeting (one of the last I would go to as the coming months became consumed with medical appointments) and telling the other women "this is ridiculous. There's nothing wrong with him!"

Why a Marathon?

I've always wanted to run a marathon. Okay, maybe not ALWAYS. But for a long time. I've never been the most fit or graceful or athletic person but I've always enjoyed pushing my physical limits. And trust me - a marathon is pretty beyond my three-babies-no-workout-regime-hardly-a-runner limits.

Of course, I've shared this dream on occasion. The most regrettable time was when I told my obstetrician about 4 weeks after my third child and first c-section. He informed me that I would never run a marathon because childbearing had abused my body beyond that point.

He's an ass.

The best time was when I shared with some good friends (whom I've never actually MET - story on that later) and got their reassurances that not only could I do it but they would do it with me. Most recently I created this silly-but-serious inspiration board on Pinterest detailing all my dreams for things I'd like to accomplish or achieve in the next few years.