If you are a preemie, medical or special needs parent, you already know where I am going with this. Too many of us have been on the receiving end of ridiculous, yet seemingly encouraging comments. I thought I had heard them all, but I find that as my daughter ages and we focus on her rare condition more than her prematurity, people continue to find ridiculous things to say and ask. I wanted to share a few of them with you and share why they’re damaging, false or toxic in nature.
“I am so sorry this happened to you!”
What are you sorry about exactly? My traumatic birth? The less-than-ideal birth story and outcome? That my child isn’t what YOU imagined? Or are you sorry because YOU can’t see the miracle in what you perceive to be a mess? So many people said this to us with pity but it’s me who should be pitying them. After all, they’ve not been blessed to experience this kind of miracle firsthand. Next up:
“Could you have done anything differently?” This one is especially damaging because it places undue blame on the mother and also renders her medical team incompetent. I don’t know one mother who would intentionally do something damaging in their pregnancy, yet alone cause deliberate harm to their baby. And if they took time to learn anything about the child's condition, they would learn that it could be a result of a genetic disorder or an anatomical issue (i.e. preeclampsia is a placental issue which caused my premature birth). I don’t understand people’s mindset when they say offensive things like this to the mother who would do anything to make their child better if they could.
“Hopefully the next baby turns out fine.”
Soooo Reign isn’t fine? In fact no she’s not fine...she’s PERFECT. I don't know anyone who would feel comfortable saying that someone else's child is anything less than amazing. But aside from that, this particular statement assumes that we actually want another child. Many who have experienced premature births or suffered from traumatic births don’t desire to have another child (and many physically cannot or have been advised not to). This is never appropriate to SAY to another parent but it’s not even okay to THINK. Through my own experience with infertility and then a traumatic birth, we shouldn’t ever feel comfortable commenting on anyone else’s fertility or family building journey unless they grant us permission.
“Will she outgrow her issues?”
This is a fairly intelligent question, but one that can evoke a lot of shame, fear and pain. In my daughters' case, she may “outgrow” or overcome the speech delay and developmental delays. However, her lung condition is one she may live with for the rest of her life. That scares me and has kept me up so many nights. I often wonder if I am feeling this way after being asked this, how do parents who KNOW their children have a lifetime of therapies, surgeries and pain feel? I think about all of the dreams they must've had for their child before birth. To know that your child will never reach the potential you've desired evokes a grief that very few could understand.
These are just a few of the common questions that have been posed to my family and so many others that I know. I’ve cried many tears over these comments and would love to share a rare in-depth look into the mind of a parent of a medically-fragile child.
Are you the parent to a medically-fragile child? Have you been asked any of these questions? How did it make you feel? Feel free to share your experience in the comments.