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CDH Community

I have been fortunate to have a couple of people I know who have also gone through a loss around the same time as me.  We have been able to talk about our feelings and be there for each other because we knew exactly how the other person was feeling.  I hate the circumstances in which we met, but am grateful to have people that understand.

While Jasmine did have CDH, in the end it seems like the trisomy was what really caused everything.  So it's hard sometimes to even feel part of the "CDH Community".  I left a lot of the Facebook groups for a while because I just couldn't handle it, but ended up joining a few of them again a couple of months after the loss.  I wanted to be able to be supportive to others who had a baby with trisomy or a baby that didn't make it.  

These pages make an effort to be there for both survivors and angel babies.  As much as they try, I know I, and a few others I have talked to, still feel like we aren't part of that community anymore.  No one who has a newly diagnosed CDH baby wants to hear from the parents of the babies who didn't make it.  And then it feels like our posts just are depressing and detracting from all the positive things that are happening with the survivors.  I can't blame people.  I absolutely did not want to hear from the parents of babies who didn't make it.  I refused to believe Jasmine wouldn't make it.  I didn't want to go through my pregnancy like that.  

What makes me sad is there were several people that I would talk to almost every day when I was pregnant with her.  They all offered their condolences when we lost her and checked in once or twice afterwards.  And now I haven't heard from them in months.  It makes me sad because these were people that I thought were friends and it hurts to not ever hear from them.  I know it's likely because they just don't know what to say.  But as I have said it before, silence hurts more than anything.  I just want to drive in the point again, that saying something at all is far better than saying nothing.  Because the silence doesn't go unnoticed.  

I am grateful to all of those people who strive to make sure that all of the CDH Angel babies and their parents are not forgotten.  There is nothing worse than feeling like your baby won't be remembered.  I know that Jasmine will.  She had so many people who loved her and were praying for her.  It's just always nice to have reminders that other people haven't forgotten.

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