Another Group?

I am trying to make a difference in the abortion rate of kids with Down syndrome.

I have met with an executive of a local hospital network and discussed becoming a consultant for the parents who have a prenatal diagnosis, so they can get the other side of the statistics.

He has referred me to the chairmen of the OBGYN and Family Medicine departments at the University of Buffalo. He made sure to emphasize that I could let them know he was sending me to him.

It is very exciting!

Anyway…

I want to be able to meet with these parents to give them support and education about what it is really like to have a child with Down syndrome.

There isn’t a parent who I have met who doesn’t wish they were more informed when they were given the diagnosis.

More information could make a difference in choosing life and most definitely make a difference in the grieving process, I think.

I am not getting much support from our local Down syndrome group.

They have basically said, “Been there, done that. Don’t waste your time.”

But my experiences with this group have not been very positive from the beginning.

It took them more then a week to respond to my email when I finally was ready to reach out, and the response was a simple email back. Not real words of comfort, or personal communication at all.

The experience was very sterile.

When we went to our first conference, not one person came over and introduced themselves to us.

We had never met any of these people and not ONE person introduced themselves.

Sure, there are members of this group who I respect tremendously, but for the most part they seem to be very haughty and arrogant.

It is hard to picture myself hangin’ with these people, let alone having Leah grow up with them.

It is very sad, actually.

The Dr. who I met with said that he thinks I should form another support group and include the consulting as a service but I don’t want any contention.

I don’t think they will welcome or work with another group.

It is very disheartening that I have had these experiences.

Our community is so precious and dependent on one another.

I don’t think I could depend on most of them or the group as a whole.

Leah needs friends who will experience some of the same things she will and I need to feel comfortable with the family members of her friends.

Steven said, “Forget them, why does she need to be friends with their kids?”

I said, “Well you want our kids to be friends with other Mormons because they are Mormon and they share something together, it’s the same way with Down syndrome. I don’t want her to ONLY have friends with Ds, but she should have some (like Gracie and Kennedy :)).”

Maybe I will take my friends advice...

Besides, we will need to find her a husband, right?