Monday, October 29, 2007

Brownback--Kennedy Bill to give expectant parents the truth about their babies

I'm supporting this bill. Read here how it would help expectant parents find out what having a child Down syndrome is really like. The reason I started Cause of Our Joy is to educate parents who do a search on Down syndrome on what is really is like to raise a child with Down syndrome.
If there were more ways to reach out to the public, as well as funding to do so, I would be the first in line to help. I tried for four years to get doctors, nurses and social workers to give out my phone number to expectant parents, with no success.
The biggest enemy of the truth in this instance is fear. Fear of the unknown. Fear of suffering, both of the child, and the parents. Fear of rejection. Fear sickness. Fear of embarrassment.
That's why Monica Rafie mentioned in this article and I are writing our book on Catholic mothers of special needs and medically fragile children. To allay the fears of these parents, and to give them hope in their baby's future. If you have a story to share about your special needs child, just email me


Anonymous said...

It is very important to have support when one finds out prenatally that her baby will have Down syndrome. (Or any other challenge.)

In my personal experience, I was given immense support from my OB (He gave us the names of a family whose daughter has Down syndrome and is living a typically normal pre-teen life.), the hospital provided social worker support, and she was amazing.

Even my genetics counsellor came to see Gabriel when he was first born. She was so touched, I think, that I wonder to this day if she can stand it when a client chooses abortion.

I am in Canada, and I cannot say for sure that the support is offered throughout our provinces like I was offered. I am surely grateful though. I love my son so much and he is uniquely Gabriel because os and despite Down syndrome.

I have given our personal information to a friend who is a pediatrician, as well as the support services where Gabe was born and here in our new location.

I have not been contacted, yet, but I always pray that my blog or my interaction with everyday folk helps at least one person to choose Down syndrome.

Leticia said...

Nephesh, you and I share a common motivation for becoming bloggers:
"but I always pray that my blog or my interaction with everyday folk helps at least one person to choose Down syndrome."

We may never know, this side of Heaven the good our blogs have done,but God knows, and that's all that matters.
May He bless your efforts.