Meet Ema

Ema Burris


The People I’m Grateful For

I’m grateful for the people I know:

The doctors,

The scientists,

The patients,

The care takers,

The social workers,

The supporters.


The people living with Huntington’s disease.

All the people like me.


All of us make up network,

A web of hope and support,

A life-long family.


And for that I’m grateful.


But I shouldn’t have to come home from school

To screaming fights

Because my mother

 Needed to find something tangible

To be angry about.


I shouldn’t have to plan her meals

And actually make sure she eats them.

I shouldn’t have to watch my mother chew her food and swallow

To make sure she doesn’t choke.

I shouldn’t have to keep reminding her to hold the railings on the stairs.


I don’t want to hear about how my mother couldn’t drive to pick me

Because she got pulled over by a cop who thought she was drunk.


I don’t want to go on the phone and pretend to be my mother

Because the person on the other end of the line couldn’t

Understand what she was saying.

I shouldn’t have to sit my mother down

And explain to her that sometimes people just won’t understand.


I shouldn’t have to watch the people I love get sick

And grow so old so quickly.

I shouldn’t have had to grow up so fast either.


I wish I didn’t have to plead for my mother to listen when I say everything’s alright;

That she just needs to be patient.

We all need to be patient.


And I’m sure everything will be alright.

We’ll beat this somehow, someday.


And I’m grateful for all the people it’s brought me to,

But I’m not grateful for this disease.