Hi, my name is Rylee and I'm 15 years old and my mom has HD. I've read a lot of the posts on this site, but I've never posted anything before. Here is a poem I wrote, about my Mom and my experience living with HD in the family.

Huntington's Disease
by Rylee

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.



Edited 4 time(s). Last edit at 01/18/2011 09:50PM by rylee95.

Your poem is so wonderful, I'm sure your Mom is proud of you. You are the kind of child everyone desires. You are in my thoughts.

This is an absolutely WONDERFUL poem, Rylee. You have such talent! Is it okay if we put the poem on the HDAC site permanently?

Wow, I agree, Marsha, this poem should be where many can read it. It tells all the progression of learning about HD and all the hard things a child has to go through. Ryleee, you have a great talent! Your ability to rhyme is good, too, better than many a grownup, because it flows.

Rylee, I LOVE your poem. Your sister and Mom are so lucky to have you watching out for them. I know how hard it must be for you. You should never feel guilty for having fun. You need your friends.

Rylee, I LOVE your poem too!! It made me shed some tears it was so wonderful!! I'm sorry you've had to endure all this. You are a great young lady, and I'm sure your mom is so thankful for you and very proud of you!

rylee. My son is 20 and the second fifteen. Meaning one was 15 like you and one 10 like your sister. The poem is very good... but can I ask.. do you have any help at all?

Wow, wonderful. Made me cry...Thank you

Wonderful, so impressed! I've sent you a message Rylee

Take care,
Matt.

[www.hdyo.org]

Hi it's so nice to meet you, that was sooo well-written, thank you so much for sharing that with us. It did make me cry for you too though, because i just wonder, is your dad still involved in any way, or grandparents or anything? I could see the real fear that you are having too, if your mom was taken away, and your fears for your sister. That is so much for anyone your age to carry. Please tell us more

Rylee,

thank you so much or shring your poem with us.

Welcome to the HDAC.

Paula

Be a good poem for Matt's new youth project site to.

Well done Rylee.xx

Wow Rylee - that was wonderful. Made me cry too. You can express yourself so beautifully - it is a gift.

thank you very much for sharing.

Thank you all for the nice comments! I like writing poems, most of them aren?t that sad though? I didn?t mean to make anyone cry! Of course you may use it on your site- I?m flattered that you like it enough to want to do that! I?ve been following the posts on this site for awhile, but I just recently made an account. I?m glad I can contribute now, even though everyone here is probably older and more knowledgeable than me!



Edited 1 time(s). Last edit at 01/19/2011 09:43PM by rylee95.

Rylee-

What an awesome young lady you are and you have quite a talent for writing poems.

In your poem you have said things which make an HD situation so clear.

I hope you have someone close who can help you - possibly relatives or friends.

I wish you a beautiful future because you are obviously a beautiful person.

Sharon

You remind me alot of myself!! Growing up I had almost the same life! Wow. Well word of advice. Keep doing what you do. Helping your family like this will bless you in so many ways. I have been blessed with alot. I still take care of my mom and my little sister. Im here for you if you need anything! I mean.. If you need to talk im here! I know how hard it is living with HD. And having no dad helps nothing!! Love you!!

Liz

Thanks!

HI Rylee- I love poems, especially ones that rhyme Poetry is a good coping mechanism to get your feelings out also. Glad you are able to use it. Thank you for sharing. It is a privilege to hear a bit about you.

Rylee,
You are amazing. What a strong girl you are. I have a ten year old daughter and I worry every day that she will find out that I am HD positive, and how it will affect her.
Every word you wrote is every thought I've ever had about when she finds out (i'm a single mom too, like yours). It's like you were reading my mind.
I wish I could take this away from you with prayers and hope, but I can't. Please feel free to post anytime, you can private message me (or anyone on here) if you want to ask a question or just need a shoulder. You are way too young to carry such a burden. We are all here for you - and those are not just words, reach out if you need to.

Now go give your Mom a big hug and kiss!

Denise

Hi Rylee...
What a truly amazing poem , your mother and sister are truely blessed to have you , your an inspiration with a huge amount of stength and courage ..Thank you for sharing it with us ..God Bless you ..
Debbie .