When I had a preemie, the gravity of the situation was dismissed by many. “A lot of people have preemies. It’s no big deal.
They spend time in the NICU, they come home, and catch up by two. It’s fine.” I was told.
Unfortunately, plenty of people still believe this myth. I understand, from a distance, that’s how it must seem. These tiny preemies grow and improve (if not catch up completely). The progress seems natural like something that happens on its own. Those on the front lines know better. They see the struggle and see what goes into being a preemie parent.
Preemie parents are survivors. Rather than a source of pure joy and excitement, the birth experience is complicated, scary, filled with loss, and sometimes traumatic. A happy ending is not guaranteed. Preemie parents endure all these things and find a way to carry on.
Preemie parents learn another language. First, it’s the language of the NICU. Then, after discharge, it’s the language of specialists and therapists. Their new vocabulary includes diagnoses, medical jargon, and names of medical devices. Later, it can include sign language or subtle body language.
Preemie parents become advocates. At first, I thought the medical community always did what was “right”. Then, I quickly learned that “right” has a different meaning to everyone. Preemie parents speak up, find answers, and get what they feel is “right” for their child.
Preemie parents are their child’s medical expert. They coordinate the specialists and the therapists. Many hours are spent shuttling the child to appointments, working on therapy goals, jumping through insurance loop holes, and talking to doctors. Preemie parents are the first to notice and call attention to an issue with their child.
Preemie parents walk a fine line between hope and acceptance. I hope all of Charlie’s delays will resolve one day. However, I am prepared to accept if they don’t. Being neither here nor there is a strange place to exist. Preemie parents spend years hoping for a resolution but preparing for the possibility of permanence.
Preemie parents organize. I constantly see my fellow preemie parents raising money for their favorite NICU or preemie related organization. We network with each other. In addition, I am aware of the online forums are created, conferences planned, and the presentations made to government officials in support of preemie related issues.
Parents of Preemies Day celebrates the parents who stepped up and rose to the challenge in the shadows of every day life. No one chooses to be a preemie parent. The outside world mistakenly believes that there is little to it. On Parents of Preemies Day (May 4), I celebrate our journeys and how far each of us has come.