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?
I'm so sad to read this, J. I've been blessed with great parent support groups in the two cities in which I've lived since Micah was born. During his recent hospitalization, in fact, the group, most of whom didn't even know me, contributed a few hundred dollars to get us a large number of pre-made meals.
ReplyDeleteAs for a suitor... Micah isn't taken... yet! :-)
I know there are fantastic resources out there Jennie, i don't know where I would be without my online support groups! It is so great that they were there for you like that. No one even knew when Leah had her surgery because no one ever returned my emails.
ReplyDeleteBy the way, Leah does seem to like older men... ;)
Aw jenn....so sorry for this tough experience..this may be the reason i never joined a Ds group locally...just online..and that was the most wonderful supportive thing for me the first 5 years or so of Kennedy's life...she's gotten older now and ive been busier and i havent been there as often as Id like. I think i will check back in thanks to you:)
ReplyDeleteA new Ds support system is a wonderful idea...i would love to be able to share my experiences with parents of younger kids and also learn from others with older ones.
Let me know how i can help, i would love to be a part of it. Please feel free to call me anytime. 778-5414(h) or cell 713-8906.
Beth