Huntington's Disease

Fifteen year old Rylee is her mother's caregiver.  She wrote this remarkable poem and allowed us to post it here.  I think it's wonderful - Marsha

She tried to hide it,
But it didn't take long
Before I began to notice
That something was wrong.

I was still young,
So I didn't understand
What could be causing
The tremors in her hand

I was confused
And I didn't know why
Dropping something
Would cause her to cry

Is this my fault?
Is it something I did?
I thought it was because
I was a bad kid

Year after year
I saw her get worse
It's painful to watch
The disease take its course

Sometimes she'd get snappy
She would be hard to please
I had to remember
It was just the disease

Where did my mom go?
Will she ever be back?
She's trapped in her body
And it's under attack

Her movements are jerky
Her arms are always flailing
I cry because I know
Her body is failing

Now, she can't walk
And she struggles to stand
The things that she says
I can't understand

I admire her courage
And I will always love her
No matter what happens
There are angels above her

I have to be strong
I do my best to care for her
I love her so much
I will always be there for her

My little sister is 10
And I try to keep her protected
I try to keep things normal
But I know she's been affected

I'm worried about my sister
On the outside I'm calm
But she needs more than I can give her
And I can't be her mom

Sometimes I feel hopeless
I have to get through this
I'm scared, and I'm not sure
How much longer I can do this

Sometimes I wish
My dad were still here
It's weird how some people
Can just disappear.

I need to stay strong
And I worry everyday
That someone will come
And take my mom away

I wonder what she's thinking
If she's even aware
But then I look in her eyes
I can tell she's still there

I can't ignore the facts
But I wish they weren't true-
There's a 50% chance
That I have the gene, too

In my hands I will get
A tingling vibration
Is it a symptom?
Or just my imagination?

I try not to worry
About what's unforeseen
I have lots of time-
I'm only fifteen.

Sometimes I leave
And go out with my friends
But then I feel guilty.
The guilt never ends.

If there is a God,
Why is he so mean?
Why curse our family
With this terrible gene?

I'm sick of this disease,
Of all the pain and frustration
If I test positive, I swear
I'll be the last generation.

In a life of uncertainty
There's one thing I'm sure-
One day, some day,
There will be a cure.
Rylee