Sunday, August 30, 2009

short version

Girl's brother is diagnosed with a disease.

Girl finds out she is carrier of same disease.

Girl is so focused on brother actually having disease that she almost forgets what being a carrier will mean later on.

Boy finally meets girl.

They fall in love.

They get married.

They buy a house.

They get a dog.

They decide to go to grad school.

They get another dog.

They decide they want to have kids.

It gets really complicated, really fast.

Saturday, August 29, 2009

something wrong

I have one brother.

The story is, my parents originally wanted three kids. They had me, two years later my brother came along. They changed their minds.

We joke that it is because my brother has a big head, that it was because my mom was on bed-rest for several weeks when she was pregnant with him, that it was because he was "mischievous" (a brat).

But deep down, I think it's because my parents felt like their family was complete already with just the four of us.

Up until elementary school, our lives were relatively normal and happy. When I watch the home videos from those days, I am always struck by how happy my parents seem. Not that they are particularly unhappy now, but you can tell they were at that place in life where everything is falling into place.

When my brother was seven, my parents started to worry. He walked funny. He always had, but we all blamed the diapers when he was younger and assumed he would grow out of it eventually. He didn't.

So they brought him to our local family doctor. He didn't have an answer. So we saw more doctors. Still no answer. So my brother had a muscle biopsy.

All I remember about the muscle biopsy is that it was supposed to hurt, and I think it did because I remember my brother crying. I remember us all being afraid. I remember him playing around in a wheelchair while we were waiting.

Strange, because what we learned from the biopsy was that my brother had muscular dystrophy. Not the worst kind, but a devastating diagnosis for an eight-year-old and his family. Now, my brother uses a wheelchair every single day.

My brother has Becker Muscular Dystrophy. It is not necessarily fatal, but can be. I'm sure I will explain it more in a later post but for now it is important to know that it is a progressive disease that affects your muscles. For most, it means you will eventually not be able to walk on your own and will need a wheelchair. It can also affect your heart.

This type of muscular dystrophy is passed on genetically. Most people are lucky enough to avoid it. Some of us are not.