Survivor’s guilt…

About a year ago I wrote a post about having a prenatal diagnosis and what I did to get through our fatal diagnosis. And I received some really rude comments when it was recently published on The Mighty. I was surprised at what they were attacking me for and I was even more surprised at WHO was doing the attacking.

I say attacking because that is exactly what it felt like… attacked for sharing the Glory of our OUR Miracle. But to her and the others, sharing MY MIRACLE was somehow “implemented’ that because their babies passed away, their stories weren’t miraculous, their babies were lesser of importance to God that He didn’t save them, that MY faith was bigger than theirs and God saved my son, that I was bragging and being flamboyant because my son survived. After a big long dragged out “conversation” that we had, her post and others were deleted. By who? I have no idea. Luckily I copy and pasted our entire conversation and I wrote a post about it on here late last night. But I soon after, made it private. I realized, after prayer, that I was typing out of anger.

I was just in complete shock about the entire situation. I think the greatest shock was WHO is was commenting such hatred. Another mother who had the same diagnosis as my son… she is the owner of a Facebook page that I followed and found solace during our pregnancy. I received so much hope and encouragement from this site and from this woman. Here she is, her son had the same fatal diagnosis and her son  passed away. Here I was, LIVING with our diagnosis, BELIEVING in everything this woman said, believing in hope and having faith that everything will eventually be okay. I was encouraged.

But then last night, I read WHO it was… and all that she had said last night… and then that is where my heart stung from her words. Because I realized that everything she had posted and said on her “loving and compassionate” site IS A LIE. SHE is a very mean person. And I was hurt by her words.. but mostly because she was someone, although I didn’t know her personally, she was someone I could relate to.

Except… my baby survived. He didn’t die like he was “expected” to.

These comments and women like these are exactly why so many of us NICU survivor’s feel guilty. Because our babies went through so much and ALMOST died… but didn’t. So many babies DO pass away… I KNOW. I saw it.. day in and day out. We witnessed it first hand. And at some point during our NICU stay most of us sat in a rocking chair unable to hold our babies, staring at their sedated bodies wondering, is my baby next??
Have any of you ever received several phone calls in a 5 month period from doctors and nurses saying that your baby was NOT going to survive the night?? Have you had to deal with the roller coaster of the unknown?? For five months, we did. And even now… we struggle with LIFE every day!! So I am NOT being “flamboyant” about my son’s survival. I am NOT “bragging” that he is alive!!
Have you ever been told that you are “torturing your baby” by keeping him alive?? Have any of you ever been told to “let him go”? I have. I have been told it was awful of me to keep him plugged in to so many machines that were giving him life. What kind of mother am i to do this to their baby?? How selfish am I??
I live with this guilt every day!! He is here with us now… STILL hooked up to a machine that keeps him alive. I feel guilty because of what happened in utero. I feel guilty for what happened when he was born. I feel guilty for what he has had to go through. I feel guilty for what he will have to go through for the rest of his life. And i especially feel guilty for all our kidney mom and baby friends that we have met that have passed away.
My son survived. He IS a survivor.
i WILL NOT stay silent about our miracles. And i will not apologize for our son surviving.
i will, however, apologize for how people THINK that I don’t believe that all babies are miracles. I- of all people- believe that ALL babies are miracles. no matter how old, how far along gestation or how long or how many breaths were taken… ALL BABIES ARE MIRACLES. But, What do survivors like me and my son do with our stories of hope?? How do we share our stories without offending anyone else??
Thanks to The Mighty and the genius of an editor… people took my experience completely out of context. And then this editor decided to “edit” my post after all the nasty comments being made. How about share the many other posts I have about survival and our struggle? Maybe this is my fault, though…. because my faith is on a completely different level than most. What I BELIEVE in and the relationship that I have with God. And if people want to perceive that as “having better and bigger faith” than them, well that sounds like a problem between them and God.
I write about my faith. I write about how I prayed and relied on God. I write about MY WALK in Faith. I choose to live according to HIS word and HIS will. And so many don’t have a clue about that. Maybe I should be better with my words and NOT allow websites like The Mighty to change my words and original content. The title alone on their post is deceiving. I didn’t even KNOW it was my post until I read it.
Shame on them… shame on me… and shame on those women, “writers”, owners, etc… i could share who they are and what companies and facebook pages they own, but I am so done with all of this. I wouldn’t want to direct someone else to their site on purpose. These people who claim to be “compassionate” sure do know how to hurt “other mothers” with their words. They claim “love” will get them through… but they obviously have “no clue” about the love “other mothers” of survivors love their way through our own journey.
For us… EVERY DAY IS A MIRACLE.
and I am NOT ashamed to say
TO GOD BE THE GLORY FOR THE MIRACLE HE HAS GIVEN ME.
P.s… Im sorry I rambled at some point of this post. I was still a little upset at the thought … but I am over it. I promise
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