What it Means to be a Member of the Preemie Parents Club

I am a member of The Preemie Parents Club.

I didn’t sign up for it – and like most preemie parents, I didn’t have any plans of ever joining. There were no membership forms, or recruitment events, or trial periods. One day, I was a typical mom-to-be, pregnant with my precious baby boy. The next day, I was giving birth to my son sixteen weeks early, who weighed in at one pound and five ounces. From there, we were in the NICU, a place I never knew existed. My baby was lying in an incubator connected a maze of tubes and wires, and it felt like my fault. He was a preemie. His dad and I were now, preemie parents. But more importantly, we were parents to the strongest most resilient human being we would ever know.

We soon learned that although membership was not a choice there was however, an admission fee.  It would cost as many prayers, and hopes. and dreams as we could spare. We spent five months in the intensive care unit of three different hospitals. We almost lost our baby, many times. We almost lost ourselves, a few times more than that. We became advocates and medical experts. Each day we grew more proud. Proud as our baby grew and beat so many odds. Grateful that despite his battle with necrotizing enterocolitis (NEC), grade 3 and 4 brain bleeds, retinopathy of prematurity (ROP) and lung disease, he was still fighting. Our membership had its perks. We knew our lives would never be the same.

All across the world, millions of parents are a part of this club. Our journeys are different, our outcomes range, but the part of us that is forever changed, is the same. In my five years as a preemie mom, prematurity awareness advocate, preemie parent mentor and writer of poetry for preemie babies across the globe, there are some things I have come to know for sure.

So, what does it mean to be a member of the Preemie Parents Club?

1. It means that our babies were born early – they went from the safety of Mommy’s womb to the uncertainty of a NICU incubator. And it scared the heck out of us.
2. It means that we had to leave our babies there. In the NICU. It means that we endured that unnatural separation every night, for days, weeks, months, and sometimes years, from our babies. And that stings.
3. It means we felt a pain that parents of full term healthy babies, could never imagine. And we don’t want them to.
4. It means that our babies almost met their life’s end at their life’s beginning.
5. It means that we believe with all of our hearts, in miracles.
6. It means that our babies were literally, born fighters.
7. It means that we have seen more grace and mercy than we could ever truly thank God for.
8. It means that we have felt tremendous loss, guilt and sadness. And its OK to say that without a “but”. Its OK to acknowledge the parts of the journey that scared us.
9. It means that we learned early to be our babies’ advocate. We learned early to speak up, take notes, and talk to the team. And we will never unlearn that.
10. It means that we are too, fighters. We have gone to battle with insurance companies who didn’t want to pay and jobs that didn’t want to give us the extra time needed to be with our babies.  It’s a shame we have to fight so hard.
11. It means, as we watched our babies grow, we GREW.
12. It means that we will have to make some tough decisions. Each step closer to home will require us to make a choice.
13. It means that our babies are born to us twice, once when they enter the world and once when they finally leave the NICU.
14. It means that our journey with prematurity doesn’t end with discharge.
15. It means that our babies may face challenges from their NICU stay; it means our baby may not even get the chance to go home. We know this from day one.
16. It means that we are scared to have another baby. Scared to do it all over again. The thought terrifies us. The NICU took a toll on us.
17. It means that our babies needs to be protected from germs for the first two years of their lives. We need you to understand that. And wash your hands.
18. It means that our babies have two ages, actual and adjusted. We measure growth and progress differently. We don’t need you to compare.
19. It means that we watch our babies sleep. We check to make sure they are breathing. We have to.
20. It means that our homes will see far more therapists, social workers, nurses and doctors than we could possibly want.
21. It means that number 20 doesn’t matter, because we are just so happy to have our baby home.
22. It means that we are naturally more grateful and appreciative for the little things. Our babies were the little things.
23. It means that we too, are survivors.
24. It means that we need your presence, love, patience and respect as we adjust to our new membership.
25. It means that our lives will never be the same.

I am a proud member of the Preemie Parents Club. No, I did not plan on joining. And sometimes I wonder if given the power, would I have chosen not to belong? Prematurity gave my son, cerebral palsy. That is the hardest part. But it also gave me, him. He survived. And since I know the outcome of our journey as it is, I am smart enough to appreciate the blessings that prematurity has given us.  I appreciate the NICU because it saved his life. The beauty in number one to 25. The lesson in it all.

I am a member of the Preemie Parents Club. I know that it has made me a better person, and better Momma. My son, is a hero. If this is the journey that God had in the plans for us, then I will proudly, we will proudly, keep on, keeping on.