From when we both went to see "Beaches" with Bette Middler singing the song "Did You Even Know That You're My Hero" it became my song for Kelly because she was my hero watching her, day after day, fight Huntington's Disease, knowing all that she had been through and had yet to go through and yet never giving up, quietly always showing her love.
Another of the songs I sang to Kelly many many times was "You and Me Against The World". The below leaves out the most important part of this song. At the end, in the song, the child says "I Love You Mommy" and she replies "I Love You Too Honey". Everything in this song reminded me of our fight to maintain Kelly's dignity and quality of life throughout HD. The last stance, always making me cry because I knew that day was inevitable.
The memories do help, but oh you NEVER NEVER stop missing those hugs, kisses and smiles.
Love
Jean
You And Me Against The World
( sung by Helen Reddy )
You and me against the world
Sometimes it feels like you and me against the world
When all the others turn their back and walk away
You can count on me to stay
Remember when the circus came to town
And you were frightened by the clown?
Wasn't it nice to be around someone that you knew?
Someone who was big and strong and looking out for
You and me against the world
Sometimes it feels like you and me against the world
And for all the times we've cried I always felt that
The odds were on our side
And when one of us is gone
And one of us is left to carry on
Then remembering will have to do
Our memories alone will get us through
Think about the days of me and you
Of you and me against the world
Remember when the circus came to town
And you were frightened by the clown?
Wasn't it nice to be around someone that you knew?
Someone who was big and strong and looking out for
You and me against the world
Sometimes it feels like you and me against the world
And for all the times we've cried I always felt that
The odds were on our side
And when one of us is gone
And one of us is left to carry on
Then remembering will have to do
Our memories alone will get us through
Think about the days of me and you
Of you and me against the world
You and me against the world
You and me against the world
If I Can't Talk, Am I Still Here
Jean E. Miller for Kelly E. Miller
30 May 1996
I was a magical weaver of dreams,
a solid and steady friend
For hours and hours at a time,
we talked as if time would never end.
You always valued my opinions,
often we'd open up and pour out our hearts,
time was an endless millennium,
always difficult when we had to part.
Then, slowly, this disease robbed me
of my ability to communicate well.
Does that mean that deep within me,
there are no dreams left to tell?
Why is it God, I ask in my heart,
as someone so very ill
that most people so deeply fear this?
Have they forgotten the magic I instilled?
Although Huntington's has taken my health,
and maybe it's stolen some dreams
it is, oh, so very much worse.
Dear Lord, it's taking my self esteem.
Because of this, I must ask
"If I can't talk, am I really here?"
Please, come take my hand,
there really isn't anything to fear.
And now, yes now more than ever,
does my very soul cry out for you
to come sit by my side and speak of times,
when we were the best of friends.
Kelly had been going through a period of depression which I knew was because her friends had all abandoned her, even the few who we thought would be there forever and even her own family seemed to be ignoriing her. After I read this to her she cried so very hard, another tear in my heart. I sent the poem to family and her friends with the note that although Kelly couldn't talk well, she still loved to have them visit and chat about their lives or, better yet, talk about her during her well days. And that every precious second they let go by without seeing her was one they would never be given the opportunity to have again.
Her two dearest friends started coming back by and stayed with her through the end. My friends and her family started coming to see her more often too.
Please feel free to use this poem if you feel it would help your loved one with HD express their feelings to a friend.
