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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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LivingWithTrisomy13.org


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How Our Babies have changed our Lives

I have been contemplating your question regarding how our babies have changed our lives. I have been putting off answering because I wanted to write something really good - that expressed just how much an impact Melina made when she came into my life that cold winter day back in December. Then I was thinking of a response to an email I had sent a friend the other day, and decided to share that with everyone instead. It starts off with my wonderful friend, writing me and telling me about an envelope mysteriously appearing on her desk the other day, with only a name on it...Melina. She doesn't know where came from, only that it probably ended up on her desk by accident. (Or, she thought, it was Melina saying hello to her.) When my friend saw the name on the envelope, it made her cry, and she wrote me right away and told me she was "devastated" for me that I lost Melina. This is what I wrote her back:

My wonderful friend - please don't ever feel devastated for me. Feel  happy / grateful / ecstatic for me that I got to experience being pregnant, giving birth to and taking care of the most incredible little angel ever. Be happy that I am able to say I have a very special little daughter who changed my life forever and has made me a better person. Feel comforted in knowing that I have a special little baby waiting for me up in heaven and when it is my turn to go there, she will be welcoming me with open arms. But be especially ecstatic that out of all the babies in the world, God picked Melina to give to me - even if just for a short while. I know now what it is like to love someone unconditionally and with all my heart. So, please don't feel devastated for me because I am truly blessed.

So, I guess that sums up pretty well what Melina has done for me simply by being my daughter. She has given me great strength. If someone had told me years ago that someday I would have a baby who would pass away and that I would actually not only make it through, but would be feeling blessed and grateful, I would have told them they were nuts. I remember there was a time (years ago) when I convinced myself that I never wanted children because I would never be able to survive or handle it if ever anything happened to that child. Not only did I survive, but I am sharing my little girl with the world. That Melina was one amazing kid to have done all that. That's my girl! Love ya turtle - forever. Thanks for changing mommy and daddy's lives. Wouldn't trade you for anything!!

Maria
Mom to Melina

 
 

 
"I believe that I have never seen the glory of God and the beauty of  humanity more than through the lives of these babies and children and  their parents."
E.H.T, MD
San Antonio, TX

Physician's Home

Not Compatible with Life, a diary of keeping Daniel
By Kylie Sheffield

Prenatal Diagnosis Information Package - Compiled by Kylie Sheffield (mum of Daniel, full Trisomy 13) in consultation with families on this web site

Articles on Eugenics, Ethics, Selective Abortion, Selective Induction and the killing of Disabled Children

Personal Qualms Don't Count: Hospital Forces Nurses To Participate In Genetic Terminations 
by MARNIE KO

 

Living with Trisomy 13
Focused on prayerful support and gifts of love to those touched by a Trisomy 13 child.
Inspired By An Angel
Attn: LivingWithTrisomy13
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Huntington Beach, CA  92649

info@LivingWithTrisomy13.org

 

 

All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to us directly by the families
and used on this site with their permission.

Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 
 

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