When we first got the CDH diagnosis, I was connected with a girl who was also pregnant with a CDH baby. She added me to several online groups on Facebook. When I first posted, I got an influx of messages from both parents of survivors and parents of angel babies. I'll be the first to say, I didn't want to listen to the people with angel babies. I was thinking "No way this is going to be the ending to my story." I couldn't stand to see the people post in these groups about losing their baby. It made me so sad and I didn't want to deal with those feelings. I was certain my girl was strong and would survive.
Now that I am on the other side of things, I see things from a totally new perspective. After we lost her, I left all the groups because it made me too sad to see the stories of all the survivors. That should've been my baby that I was posting about. Posting all of her hospital milestones and then posting finally that we get to go home. Then I ended up rejoining because there were people posting about their babies being diagnosed with trisomy and I wanted to be able to help. I reached out to a couple, but they didn't really want to listen to me. So now I was completely on the other side of things. But I get it. They don't want to hear from the ones who lost their babies. They don't want that to be their baby. I am sure they will go along the same path I did and hoping for the very best. And hopefully they will get better outcomes than I did.
It's just interesting how your perspective can change based on your experiences. At first, I joined the group to get support from other people and to focus on all the positive stories. Now, I stay to provide support to others. I still feel weird posting about my daughter sometimes because I know that no one likes hearing the sad stories. But I like having a place where she can be remembered among other people who have also dealt with the same defect.
By the way, the internet is such a great invention. It is amazing how you can find support from so many people you have never even met!
Now that I am on the other side of things, I see things from a totally new perspective. After we lost her, I left all the groups because it made me too sad to see the stories of all the survivors. That should've been my baby that I was posting about. Posting all of her hospital milestones and then posting finally that we get to go home. Then I ended up rejoining because there were people posting about their babies being diagnosed with trisomy and I wanted to be able to help. I reached out to a couple, but they didn't really want to listen to me. So now I was completely on the other side of things. But I get it. They don't want to hear from the ones who lost their babies. They don't want that to be their baby. I am sure they will go along the same path I did and hoping for the very best. And hopefully they will get better outcomes than I did.
It's just interesting how your perspective can change based on your experiences. At first, I joined the group to get support from other people and to focus on all the positive stories. Now, I stay to provide support to others. I still feel weird posting about my daughter sometimes because I know that no one likes hearing the sad stories. But I like having a place where she can be remembered among other people who have also dealt with the same defect.
By the way, the internet is such a great invention. It is amazing how you can find support from so many people you have never even met!
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