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"I never imagined Hailey could be as amazing as she was since she was so sick. But she was the BEST baby and daughter I could have asked for. She brought me so much joy my heart overflows. Even after her death when my heart is broken because she’s not here, the memories I have of her make my heart overflow with joy. She was simply awesome," from She Was Always in His Hands: Hailey Marie
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Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on.
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Our Trisomy 21 World |
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by Diane |
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My daughter was born on March 17. As Irish Catholics, this was the luck of the Irish to have such a date for a child to be born. However, our luck would be a different kind of luck than we expected. It would be hidden in a blessing that we were not quite expecting. On this St. Patrick's day, we would learn what it is like to have a child born with Trisomy 21.
Emmy was diagnosed at birth, by a cluster of features that are seen on children with Trisomy 21. This would be the beginning of a whole new life for all of us. The minute we heard she had Down syndrome, we knew we would be different people.
Ironically, we became different people alright, only not the people we thought we would become. We pictured ourselves slowed down by a child who would learn slower than our other children. This is not at all what came to be. Emmy has shown the world that she has her own timeline. It may not be the same as others, but it is just as amazing!
We read all about all of the things Emmy would not do. We heard from specialists how hard it would be. The one thing they could not tell us, was the amount of joy we would experience. They could not know this, as most had never raised a child with Down syndrome. They were giving us information that they had aquired from their books becoming the professionals they are today. The real stuff, what it really is like, was missing from their dialogue with us. We turned to others who would help us to understand what it would be like. This helped tremendously. We would learn that it is not much different than any parenting we had done with our typical children.
And so the journey began, of us trying to advocate for our little girl, and teaching others that we believe in her, and now could they please believe in her. Along the way, we got plenty of calls from new parents, asking us for help. We realized that although there were many wonderful publications out there about the journey of Down syndrome, not many of them touched upon it from a Catholic perspective.
So, we joined together with other parents who are Catholic, and journeying down the road of Trisomy 21. We are parents from all over the world. We want to share with you the love and the joy we have for our beautiful children. We hope you will take some time to come on over to our site, Hidden Treasures, The Trisomy 21 Journey and meet our children. We think that you will be pleasantly surprised to meet them. And along the way, you will be charmed by our little darlings, who are sporting just a little extra!
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by
Elizabeth
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I want to tell you about my beautiful baby girl and about how good it is to love a child every moment of her life. About how hospice helped the not-so-good part: living and helping Elissa live, even while she was dying.
My tiny girl could not smile, could not hold her head up, could not do the things infants “are supposed to” … disabled, something wrong with her, severely handicapped, all the labels the world might apply. Yet we saw her as perfect, just as she was: beautiful, miraculous.
Two months before Elissa was born, we found out she had lissencephaly. (Lissencephaly is a rare chromosomal disorder characterized by smoothness of the surface; lissencephaly means 'smooth brain,' i.e., brain without convolutions or gyri.) The disorder showed up only because of an ultrasound scheduled to assess minor spotting. It would...
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