Tuesday, October 7, 2008


I'll begin by letting you know that I got my feelings hurt and I'm not very happy about it. From that statement, you can choose whether or not you want to read the rest.

As in most situations where there's something "different," you can expect that people will say things that are unintentionally hurtful. I started to expect it soon after we found out about Emma. There have been one or two things said to me that I've thought, I would've preferred they had not said that, but other than that there wasn't really anything that really bugged me until today.

Last night I went to join two different anencephaly yahoo support groups. I still have so many questions that I just can not find answers to and I feel like the best resource is going to be those who have gone through the same thing. While there are several different anencephaly support groups, these are both for mothers who have decided to not abort their pregnancies. Before you can join you have to be approved by their group moderators. It makes sense to me - it's a very sensitive issue and you only want people who are going to support and uplift each other. So I had to give them some information about Emma and I before they would approve me. Today I got emails back from both of the group moderators. One accepted me and said she was sorry that I had a reason to join their group but hoped I could find great comfort out of that group.

The other?

My approval is still pending. This is what has really hurt me. Apparently, because we're planning on inducing me at 35 weeks, I don't qualify as a mother with an anencephalic baby who is choosing to still carry her. I need to carry to at least 36 weeks to qualify. If I can explain my situation better, I might be allowed into their group.

You might be thinking, how did that upset her? And I don't know how to explain it any better, just know that it did.

I don't think I'm going to reply. My first reaction was to reply back about how I was just as good as of mother as anyone else and she had no right to not let me into their "mommy and me" group. But then I thought about it and realized that she's probably the moderator because she's been there too and I don't want to make anyone else's life harder by being mean to them.

In trying to see the positive side of things, it did remind me that Tim and I need to make this 35 week thing a matter of prayer. Which was our intent from the start, but I had been waiting to make sure that the doctor was on the same page first.

I'm glad the other group welcomed me in with loving arms. I plan to use them as a great and helpful tool and resource.



I think you have every right to have had your feelings hurt! You are kinder than me b/c I think I would have told her a piece of my mind such as "full term" is 37 weeks not 36 so they too are not "technically" carrying to "full term" all I can say is "HOW RUDE" (like Stephanie Tanner on Full House) We love you and your family and thank you again for sharing this journey with us.

Josie said...

Dude. Some people just don't think. I would have been hurt and angry. I hope that one group proves to be a good resource for you. Who needs the other one if they're going to judge people that easily. 35 weeks is definitely NOT something to be ashamed of, and like the other person here said, why would they consider 36 weeks any "better" when "full term" is at least 37? Some people are stupid and I'm sorry you had to run into one of them.

Lynette said...

Hang in there, Tiff. It shouldn't matter to anyone else what you choose to do -- you are doing what is best for you, Tim, and Emma - with the Lord's help, and that's what matters. You are an awesome mommy and person and I really admire you -- you are handling it so well. Keep your chin up and just keep doing the best you can. You're awesome and I love ya!!

Kristen said...

My thought is that if that was a criteria for them they should have made it clear from the start. I understand why you're hurt, but you're right, making the moderator feel bad won't make the situation any better. It's probably better that you just spend time with the other group.

Mac said...

First, I wanted to say that I hope you know I would never compare my situation to yours. I can't imagine what you are going through, and I dislike it when people assume they know what I'm going through when they do not.
Having said that, I wanted to say that it took me a long time to join a support group. I knew that there were a lot of opinions out there about autism and I didn't want people questioning my decisions. I finally did join, and I learned something pretty fast. Since there are so many schools of thought on the subject, we disagree about a lot of things. But the cool thing is that we know that we have all earned the right to our opinions. We have an idea of what the other mom has been through. I can imagine them in countless doctors offices, trying to coax words out of their children, trying to regulate their diets and figure out their gestures, just like I do with my son. It's like we're part of a war and we've all earned purple hearts, so if they disagree with me about vaccines, it's okay...because they're my war buddies and I know they still respect what I've gone through.
I think it's good to surround yourself with people who respect you the same way. I think it is hurtful that a support group would undermine your experience because of a decision that is personal and that only you have earned the right to make. Especially since they should know better. I'm sorry that happened.

heidiabe said...

It sounds like you found out that you probably wouldn't want to be a part of their group anyway. I'm glad you found a good support group. Having other people around who know what your going through is so important.