Dear Preemie Parent,
Hi there! I saw you today. I smiled. Maybe I asked you how old your preemie was or maybe I didn't. I feel like I can sometimes pick a preemie out of a crowd. One day, you might too.
I want to tell you a little bit about about hope. It took me a while to get here. Sometimes I thought about it every day – about when we we'd get “out of the woods” and no longer have fear that there would be something else wrong with our preemie.
I have spoken with many preemie parents over the years. One common thing that almost all parents remember is what the doctors told them about the future in those first days. I too remember. Do you?
My preemie was born with no heartbeat and was not breathing. What we were told is a) he probably wouldn't survive. There was a neurologist that came to my hospital room the day after our son was born. (Thank goodness I was still hopped-up on morphine at the time that even though I heard those words, they didn't process in my brain. I am pretty sure that was my body's defense mechanism). And, b) if he did survive we needed to be prepared for a long road of having a child with severe brain damage.
Today, my preemie is an amazing student – a far cry from what the doctors told us almost 12 years ago. He plays sports – wrestling, baseball, basketball and football. I try not to think about it too much, about how far we have come – how far he has come, but when I do, I am in awe. I don't think about the fact that I had to call my husband from our son's bedside and tell him he needed to come to the hospital because our baby might die that day. That thought will be tucked way back in the depths of my brain forever, I am sure. I don't think about the fact that I was paralyzed with fear in those 3 months we spent in the NICU. I cried almost every day – more than once. Did you? I was angry, sad, scared and happy all in the same thought. Were you?
Listen with your “third ear” to the doctors. Doctors are amazing, intelligent individuals and I wouldn't want their job, not at all. 99% of the doctors we have come in contact with over the last 11 ½ years have been awesome. But what one doctor told me is that sometimes they are just really good guessers.
Of course, too, we had one doctor in the NICU that even though they knew that there was a real possibility of a grim future, he gave us the ability to hope for something more. Dr. S will always hold a special place in our hearts. He was the only one who gave us the tiniest bit of information to think that we'd actually make it outside the NICU doors with our baby (alive and well!).
When we go back and see the doctors that saw him in those early days, they are amazed and impressed in the young man has become. Our story is unique – or is it? I have heard so many “we thought he'd never make it” stories over the years and I love every single one of them. One of the residents told me while we were still in the hospital that in the middle of the night, when she had to stay overnight in the hospital, she would come into the NICU and hold our little guy. She said she knew she was holding a miracle and that nobody she knew had ever seen a baby survive who started out the way he did. So, doctors go on what they know. My son's doctors only told us what they had seen. How I wish I could remember the name of that neurologist - I'd love to show him how far we've come. But, I want the doctors, to give another parent a little bit of hope. Maybe they can tell the next set of parents who have a baby who has an APGAR of 1, is barely breathing and may not survive - maybe they will tell them that while their little fighter has had a rough start and a lot of babies don't do well after this, there are some babies who pull through and surprise the hell out of us. I hope to God that your baby is one of those babies. Meanwhile, we are going to do everything we can to make sure that he is. We're going to try and we hope you come back and show us in 11 years how great he's doing.
And then those parents are going to think to the future. 11 years from now!? Wow. They are going to try to picture their life with a 11 year old. Sass and eye rolling and a stinky boy coming home after practice (and he will offend you with how much little boy sweat smells) and they will smile through their tears, because someone gave them a little bit of hope.
Are you that parent?
Have hope. Don't listen to all the doom and gloom. Pray if you're the praying type, ask the universe to help you get through your bad days if that's what it takes. But, please, oh please don't loose hope. I've been there. We've all been there (did you know we're a part of an exclusive club?). Ask for help when you need it. Find organizations like ours that will link you with a mentor who has walked in similar shoes. We get it. Accept our hug – in person or virtual.
Another Preemie Mom who gets it
Beth is the President of The Little Bear Foundation. She is the mom of 3 children - one preemie and two full termers. When she is not helping others through her Little Bear work, you can find her on the sidelines of a football field, basketball court, baseball field or soccer field cheering on her amazing kids.