I thought I was bitter. I thought I was resentful, begrudging, hostile, petty, and all those other things. I am not proud of and did my best to suppress some of my thoughts and feelings. But then, I discovered that I’m not a horrible person. Rather, my instincts and feelings are completely normal.
Recently, I agreed to write a monthly guest post for a non profit preemie group’s blog. In my search for inspiration and ideas, I asked my micro preemie parents group for topic ideas or suggestions. They stepped up and supplied many ideas.
That evening, I scrolled through the list of suggestions and made notes. Midway through the list I read the remark, “Please, no more preemie miracle stories.” I could not believe what I read. I paused and read it again. There it was: No more miracle stories. Even more incredible, the several comments that followed were in agreement. I believed I was alone in feeling this way.
Anyone who has ever had a preemie have been told the miracle stories. In the stories, the smallest and the sickest in the NICU eventually go home. They become one of those preemies that quickly and easily catch up by age two with no long term issues.
The stories travel by word of mouth, as articles passed around social media, or posts on blogs. Occasionally, a parent will write a message about their miracle baby in a preemies group with a “Don’t lose hope!” or “Trust in God” moral attached.
I despise these. Because, my baby, like countless others preemies is not one of those stories.
While I understand they are well intentioned, the people who perpetuate these stories do not understand the world many of us exist in (or have forgotten it). I am hopeful that Charlie will catch up eventually. But, I wouldn’t call her progress a miracle. It has been a slow, arduous, frustrating, and desperate journey.
When someone posts in a group about a miracle preemie, to me, it is like eating a five course dinner in a room full of starving people. All of us, badly want our babies to “catch up”. However, it may not be the reality for some and others have to work much harder for it. People forget the reason these stories are so amazing… they are not the norm.
Seeing or hearing the stories is a kick in the gut. I’m happy for those families. But, hearing the tales is simply pointing out another path that was not part of our journey. It doesn’t not provide the intended hope. Instead, I find myself thinking, “That’s nice but it’s another place we were supposed to go but didn’t.”
(For the record, I am unaware of a single parent that “loses hope”. Most micro preemie parents are strong, resourceful, networked, and relentless.)
I thought I was alone in my distaste for these miracle stories. I was ashamed of the annoyed grumbling I did under my breath each time I encountered one. It was a nice surprise to find out that I’m not the only one.