I recently saw an exchange on Facebook where a preemie mom was posting facts about prematurity in support of Prematurity Awareness Month. This particular post was around the cost of healthcare for premature children and then at the end, she posted how much money her own daughter’s medical costs have been so far. Someone responded, “Money is nothing, be happy she’s alive”.
I have to give the original poster credit. She nicely replied that she is, of course, happy her daughter is alive but she also felt it was important to bring awareness to the magnitude of the problem that prematurity is for all of us. The response back was something like, “I was just trying to point out the positive :-)”
It wasn’t my post to comment on and I don’t know the circumstances of the commenter or the relationship between the two women, so I stayed quiet. Maybe it was the, seemingly, passive aggressive use of the :-), but that comment made my blood boil.
In this blog space of mine, I do want to address my interpretation of that exchange because I think many of us preemie families have the perception that the rest of the world just wants us to “get over it”. Once the baby is out of the hospital, and everything is “just fine” the family and the world is supposed to move on and be “normal” again.
This vent/response is for the moms and dads that are hurt every time someone makes them feel that way.
No, I’m not over “it” and here’s why; “IT” is not over! My days revolve around “it”. Between tube feedings and oral feedings, I work with my son on feeding for 4-5 hours a day. When I’m not working on feeding, I’m scheduling appointments… pulmonary, nephrology, genetics, ophthalmology, audiology, physical therapy, occupational therapy, neonatology, allergist, pediatrician and soon, we’ll be adding in speech therapy.
Every cold and every sniffle sends me into anxiety. I instantly start thinking about what plans I am going to have to cancel and what is going to be impacted if we go back into the hospital. And by hospital, I often mean the Pediatric Intensive Care Unit. Nineteen months later and I still worry if he is going to be able to breathe on his own when he’s sick. Nineteen months later and I’m still lugging around oxygen tanks and monitors and tripping over cords because he needs breathing support.
Yes, he is alive and I am so thankful for that. However, I’m not sure which parts of “Medically Fragile” and “Failure to Thrive” fall into the “just fine” category. The fact is Owen is better than he was and, in many ways, exceeding expectations, but there is a long way to go to get to “just fine”.
And then there is the most hated word of all. “Normal”. I’m not 100% sure what “normal” means, but I do know Owen’s course isn’t it. He’s not had a typical course and so far, his outcomes are not that of a typical child his age. He is different and it’s my job to prepare him to navigate these differences.
So far, I really think most people understand the Owen piece. However, what onlookers have a harder time understanding is why the rest of us aren’t our “normal” selves anymore. Let me just put it out there really, really simply. I will NEVER be the same person I was before Owen was born. 95% of the ways that I have changed are for the better. I’m a more balanced, empathetic, appreciative and kind person. The other 5% are the memories of fear, helplessness and devastation of spending 181 days in a place where babies – very real babies, not just babies I’ve read about in the newspaper, friends’ babies and nearly my baby – die. You see, in my old “normal” world, babies didn’t die. In my new world, I think about those that were lost every day. I’m no longer naive to the true pain that is in the world. I’ve felt it and the scars still ache. I’m prepared for them to always ache.
So yes, I have changed and I am moving forward from where I was, but I will not forget. I won’t forget for myself, or my family, because with the pain, came so many wonderful things. I also won’t forget because there are new families going through it today and more families will go through it tomorrow. When it seems like I’m dwelling on the negative, please keep in mind that it’s not about being negative and not being able to move forward. Prematurity awareness is about reality. It’s the reality for 12% of births! Sharing knowledge is not being negative. It’s about wanting to do something – anything – to help others never have to feel it.
Ahh, that felt good to get off my chest. What do you have to get off your chest today?