A Preemie is NOT A Preemie

I believe every preemie story is unique.

I believe that anytime your child is in the hospital, it is hard, lonely, frustrating, scary and sad.

I believe my letter to new preemie parents is valid regardless of the course the individual baby has.

I believe the data that proves any child born before 39 weeks is at a greater risk of short and long-term health and developmental issues.

I believe that the emotional toll for all preemie parents is significant, valid and, for many, life long.

And, whenever I see this statement; “36 weeks or 23 weeks, a preemie is a preemie” I feel like someone wearing 6 inch stilettos is kicking me in the gut.  Honestly, just typing those bolded letters bring tears to my eyes.  It makes me feel lonely and like I should discount some of the harder parts of my experience.

There are many shared experiences within a NICU stay.  The fear when you find out the baby is arriving early.  The loneliness of not having the baby in the room with you, instead you have to walk through the halls (often seeing other mothers with their healthy babies) to see your child in the NICU.  You have to ask to hold your child, there are cords and strange machines, IVs, frequent blood draws, feeding tubes.  You’re discharged from the hospital and your baby stays on.  It’s not the experience any parent can prepare themselves for and it’s devastating   There is guilt and anger and hurt and sadness.  No matter the length of the pregnancy, when your child is born sick, all of this is true.

At the same time, some preemies have additional complications that can add further layers to that hurt.

When you’ve been in the NICU a certain point of time and all the babies who were born at the same time as yours, or after yours – at the same gestation who were also really sick – have been home for weeks or months and you’re still going to the hospital every day.  You are still wondering if you will ever bring your baby home.  That is another layer of hurt.

When you have pictures like this with your child.  Pictures that were taken because you realize these may be your last moments with him.  As you walk through the NICU halls and feel the looks of pity from the staff, because you know, they don’t think he’s going to live.  When the Social Worker and Chaplain stop by, not just to say hi, but because the doctors have called to let them know there is imminent concern for your child.  That is another layer of hurt.

Owen and Tatum shortly before Owen's emergency bowel surgery, May 24, 2011

Owen and Tatum shortly before Owen’s emergency bowel surgery, May 24, 2011

When it slowly sinks in that you’re not just a preemie parent, you’re also a special needs parent.  That your child isn’t “just” not going to get “normal” at birth and infancy, he’s probably never going to get “normal”.  That is another layer of hurt.

I don’t say this as competition.  Competition, according to Merriam Webster, insinuates a rivalry.  I believe the preemie community needs to unite and support each other because there are so many ways that we hurt alike.  I would never discount the hurt that someone is feeling because they haven’t had as many complications as we have dealt with.  At the same time, I would never discount the other layers of hurt that some had that we did not.  I will not compete, but I do hope for perspective and support.  Perspective.  Not competition.

I recently had lunch with a NICU friend whose son died after 7.5 months in the NICU.  She’s been very open that it’s important to her to maintain relationships with her NICU friends because she is still not “over” the NICU experience.  She knows that other NICU and preemie moms understand part of her experience that the rest of her world does not understand.  I cannot begin to understand the layers and layers of hurt of losing a child.  It’s clear to me and to her, that some of our hurts are different.  But, because we also share many of the same hurts, we still depend on each other in our support systems.  Our journey and our perspectives are different.  Both perspectives are valid and honest and true and much too real.  Each perspective hurts, but the hurt is not all the same.

I don’t care what gestation your child was born.  If you didn’t get what you expected; that hurt.  Your hurt is valid.  I want to support those layers of hurt; each layer of hurt.  I hope you also want to support each of my layers of hurt.

Does that make sense?  I am not a proponent of competing on who has it worse.  I agree, that’s a ridiculous and very unhealthy notion.  However, I can’t discount parts of my experiences or anyone else’s experience because they didn’t happen to everyone else.  Whenever I hear, “…a preemie is a preemie” I feel like I’m expected to forget those layers.  I won’t forget and I need help getting through those layers.  I don’t want to ignore them.

Each story is valid and, in its entirety, deserves each other’s support.