Neves Poem - Written in 2007

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I’m sitting in the hospital, waiting for the time
For the doc to come and say to me
“your little girls alright.”
She comes into our room
and is looking kinda glum
She says “theres something wrong,
 I’m very sorry hun”
“Your daughter has a syndrome I’m sorry to have to say”
“She may not talk she may not walk she wont be able to play”

I take my little daughter and I hug her really tight
I tell her that I love her and everything's alright
For she is my little girl my ray of shining light
I loved her then, I love her now, I will love her for all time

We take each day just as it comes for that is what we do
We smile and laugh and play alot and do some therapy too
You see my daughter has a syndrome, but I focus not on that
I focus on the good things and not just on the sad.
She needs some extra care, some extra patience too
She cant yet talk she cant yet walk but she would love to play with you

If we try really hard and work at it each day
Who knows just what she’ll do, who are we to say
She is already passing everything they said she wouldn’t do,
 so I say
She WILL talk she WILL walk and she would love to play TOO

My daughter has a Syndrome, you may not have heard of it
But don’t treat her differently thats not fair is it?
Ask me and I will tell you all about our story
Ask me and Ill tell you about our Jouberts syndrome journey...

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