Into this world I come,
A little cry to say.
"I'm alive."
I open my eyes,
I see lights and people,
I listen and, ah, there is
Mom's voice so tender.
Everything looks so big,
And I am so cold.
Then, all seems so dark,
I don't feel right.
The doctor realizes something is wrong,
I hear the fear in my moms voice,
They take me away from mom,
To somewhere so different.
Here they go again, poking me,
Why don't they quit, I don't know.
I want my mom, she will make
Them quit. But where is she?
I don't know.
My mom is here now,
I hear her voice,
The doctor is telling her,
I have many problems,
My mom is crying now.
What did I do?
I don't know.
Several years have gone by,
I'm getting bigger with each day,
But mom has to do everything for me.
I wonder what it's like to talk,
To walk, to be able to play,
This is something I'll never know.
For you see, I'm trapped in a
Body that can't do anything.
Author notes
I wrote this piece in the voice of my niece, Danielle. She was born with Acardi's Syndrome. This syndrome only effcts girls. That means that the petition in her brain is not there, and it has led to a life of problems. The oldest girl that lived with this snydrome died at the age of 15, Dani is now almost 17. But I have to say that my sister is my hero when it comes to my niece, as the doctors have told her to institionalize my niece and she refuses to! That is true love and courage!
I sent this one to my sister, for my nieces birthday and she loved it! She said it made her cry. Thanks for all the support you have shown on this one!
Hi,
I just read what was posted on the website. I just wanted you to know how much I really appreciate all the support you give me.
I thought you should know that you misspelled Aicardi Syndrome in the Author's comments. This is not suprising since it is not a common word to spell. I do love everything that you have done and said and I appreciate all the outpouring of love on the website.
Just a few notes about Aicardi syndrome that I guess I have not passed onto you. Boys are concieved with the syndrome but do not make it through Gestation, that is why only girls appear to have it. There have been some that were older than Dani but I do not know the exact life expectancy. The girl that died at 15 was the one that the doctor told me about shortly after Dani was born and I asked if she was going to die. This was the oldest child he personally had treated. I just thought you would appreciate the update. Thanks again for the Poem and I will treasure it always.
All my Love now and forever.
Ann
Written April 20th, 2000
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awww
it almost made me cry...
your sister is strong for taking care of her...
I believe that it's the deepest love that keeps you moving and pushing agaisnt all the odds...danielle is extremely lucky to have gotten your sister as a mother cause NOT everyone is that strong!
believe me I know I have seen it.
ty for the links
::LB::
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The strengh that these parents have just blows me away. When my child has a silly cold I freak out. I thought chronic ear infections gave me the right to whine. GOD BLESS your sister and GOD BLESS your niece
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Beautiful work here
Children truly shows us what love really is .
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Thank you so much for sharing this in the contest. I know it could not have been easy to write, I must admit to crying like a baby reading it myself. You've done a great job captivating what must be going through the mind of your niece. I really admire that and the courage you and your family face. Such strength and I commend your sister for hanging in there and refusing to institutionalize her. I don't know, but I'd like to think I would be the same way. This just goes to show the world is full of phenomenal people and they touch you from all corners of the world. Thank you for making us all aware of this and much strenght and love to you all.
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such tears
i cried at this, when kate was born she had a defect that afffected her brathing. she almost died twice by age 2
the doctors healed her with surgery.
then i read this and remembered all the children in the hospital picu and nicu units that did not come home and were taken to heaven
my tears and heart are yous, your sister's and dani's
my prayers shall be diligent and many.
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Many thanks Kind Sir. I wanted my niece to have a voice, I worked on this one for almost 6 years before I sent it to my sister for nieces birthday last year. I am glad to hear that your daughter is doing well now.
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beautiful!!
This is a beautiful and most precious piece!! You have done your niece very proud here dear!! It is an honor to know such a strong soul. Good luck in the contest!!
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a good piece, it is a crazy life for some, and others make sure they have as comfortable a time as possible. spill ink and twist me into the crazy shape of love...
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Your poem is lovely. Very well written, I'm sure your sister would be very happy and I hope she is well.
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I would say that she has had a hard time of it but at the same time she has so much more than others. By that I mean the love of her family. That's something to be grateful for. I'm so sorry she was born this way, it must be tough, but I really felt this poem. I feel angry at the injustice of it all but then at the same time I feel happy at the love she recieves.
Have a dreamy day,
~*PointLessOne*~ -
wow this is a really sweet and touching poem grams. i love it though cuz it hold so much love.
ur sisters lucky to have you and so am i.
jess -
This broke my heart, it reminded me of losing a grandaughter, then almost losing a grandson who was born stillborn but then revived and then my last grandchild who was born , had a hole in her heart... it made what thier little lives went through more vivid. My daughter is now pregnant again and due in six weeks, it is a scarey thought and all I can do is pray that this time she gets to enjoy a normal healthy baby right from the start.
You always blow me away with your imagery, you have the knack of taking us on the ride without using a mess of fancy words like some feel is necessary, you teach us through your words that imagery is about well placed words and not how long or complicated they are. Thank you so much for asking me to look at this, it reminds me of how very thankful I am for the grandchildren I have been blessed with.
God bless dear, Suzi -
Well wrote
very good write even adults can feel trapped in bodies i did after my head injury now i am whole of many years of threarpy and meds to correct a chemial inbalance i feel you did this very well you got the feeling across very well you have done an excellent job thanks for sharing such a outstanding write have a great day and much love brenda -
SO SAD & YET FILLED WITH LOVE & HOPE!
It was sad to hear of the cards in life that you niece has been dealt - and you sister and all your family, too - BUT it was hopeful and inspiring to hear how much your sister (and you) love Danielle (such a lovely name for a lovely child) and continue to care for her in her home where she deserves to live and to be as happy as she can be! This was a touching, heartfelt, and soulful piece, indeed - that brought a tear to my eye BUT a warm feeling to my heart to know that Danielle's family isn't giving up on her and that they fully and completely love her! I'll make it a point to keep Danielle in my thoughts and prayers - everyday!
Peace & Love!
Earl. -
This poem is full of love which is the strongest strenght! with a family like your's, i'm sure it will give Danielle the strength to live. you all give great support, i can just tell. i think this is my favorite poem by you mom. keep it up! i love you so much.
Love, Little One. -
This is a beautiful poem and although I congratulate you on how it is written, I also congratulate you and your family for the love you obviously have for one another. I wish Dani and her mother all the best
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Thanks Craig, I basically posted for input, I am going to send it to my sister as a gift, and wanted to see how others liked it. Thanks for the kind words! means a lot to me.
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Wow! That's a beautiful poem, and with wonderful inspiration! I am so proud of your sister and Dani for making it through all this! I hope she lives a long, happy life.
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i dont know what to say honey life is so cruel, i wish you and your family lots of love n peace Craigxxxxx
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Excellent
i was touch by this poem it show what a tender and compassion you show for those you love what a honor to her it sad that these things happen in life you have show us though your eyes which brings uderstanding thanks for sharing this poem take care b -
This is a very touching poem. A dear friend of mine, a sister, her daughter had a diseases like this one and Audrey died at age 6. We both saw not the disease in Audrey but that she was a great teacher and a strong spirit. Her presence could be felt and experienced like an angel entering a room. She was and is still with us ..in our memories..and in our hearts. Daoine
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beautiful
This is wonderful. Your neice is a strong young woman. I hope her life continues to be beautiful. Miracles happen to good people, so I suppose you'll have many more to come. Thank you for sharing Dani's story, auntie. I'm sure it'll inspire someone.
Love ya,
~*~Austyn~*~ -
a tender beautiful enlightening poem
The sensitivity of your poem, for me,masked any sort of errors ( if there were in fact any) I have a frustration with the grammatical errors and spelling mistakes of those who criticise yours and the words of others.You have written a poem about beautiful courageous Dani ,( as if through her eyes)who has a medical comdition that is new to me (And I have been around for a long time!)Thank you for making me aware of it without any sign of the self pity which would be quite justified.G-d Bless you ,Dani and your family.Thank you for your warming comments ,once again, this time for Loves Infant Petals Rhygirl60 -
Absolutely beautiful!
This is amazingly wonderful, I love the emotion, the imagery.
Keep writing these great poems…….. Pls check out “fetus” and feel free to share it with your sister …much love to Dani.....
Edited on Jul 18, 9:06 p.m. because ''. -
Thanks Bubs,
Yea it does seem to be everywhere in my family. But I have to say, in some ways yes, it has made me stronger, I have had to learn how to stand up for them and fight for them when they cant do that for themselves. I really appreciate your kind and supportive words! But that is why you are my brother! I love you!
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This is a beautifuyl peice. It made me cry. Thank you so much for sharing it.
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Wonderful
This is a very touching piece i love how much passion you show with your writting. I am sorry to learn that you whole family it seems is burdened with disabilities but i see it has made you a wonderful and loving person which is unusual. Most become bitter and withdrawn I am proud of you and all that you are........Love Michael -
thank you for sharing this very personal
poem with us.
i will send prayers to you my friend.
all of us are gods miracles
and i know your cousin has brought much joy
to your familys life.
a big hug
candy -
aweee. this is absolutly beautiful! It takes a tragedy and makes it seem a little better. I hope that girl is doing okay and lives a full life. truley. I disaree with the person above me, i love that line. I love all of it. amazing!
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I love this write but I dislike this line; I listen and, ah, there is...but I love everything else. I think the ah part through it off though. But I know why you used it. Great Write!
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