Four years ago, I wish I had known lots of things.
I wish I would’ve known that my hands would no longer be recognizable from all the hand washing.
Or, that people would say things that were meant to be nice, but really just cut to the core of our reality. “Oh, you’re so lucky you get to rest while someone else babysits your baby.” Oh, honey. I hardly slept a wink. I was on the phone with the night nurse quizzing her endlessly about my son and his recent antics. I would hardly call my every three-hour pumping sessions as “restful.”
I wish that someone had told me that it was okay to cry when I left my son each night in the NICU and completely normal to cry when I left my other four children at home to go see him.
I wish I had known that the feeling of helplessness that manifested itself during our 44-day NICU stay would fade away and then re-emerge at the most inopportune times.
I wish that nuns lived at the hospital.
I wish that someone had told me I didn’t have to go it alone.
I wish someone had told me that I was doing enough. Loving my son, Luke, enough. That I was bathing him right. Pumping correctly. Sitting at his side the right amount of time. Loving my other children the same. Giving my husband encouragement. Updating my friends and family.
But, it always felt like I was treading in the deep end. We would get crazy awesome news only to be sucker punched the next day. Some people call it the NICU rollercoaster. I call it the third ring of hell.
What I came to realize through our NICU stay and subsequent surgeries, hospital stays and endless specialist and therapist visits is one very simple lesson. I learned to love, despite all the odds.
It’s hard to do – that love thing – with all the beeping and coding. All the nurses running, charts clicking and specialists knocking. It’s hard to see where you want to be when you look around and hardly know where you are.
For me, I found love in the smallest of moments. It was always those seconds when my heart dropped and all I could see was the black hole of despair, that God would creep in and shine His light. Sometimes I told him to get the eff away. But mostly, I listened. There was the day our son had his MRI, an unexpected order from a newly gained specialist, neurosurgery. The news was not good. I closed the curtain to our bay, turned down the lights, put Luke in my arms and began to feel sorry for myself. I’m fairly certain I went through half a box of tissues that day.
And then I heard it. Every NICU mom knows that the quick feet of nurses running down the hallway and the hurried feet of the pediatric surgeon are never good. For more than 20 minutes, I watched the activity below that two-foot space between the curtain and the floor. And then came the tears. A mom screamed, “NO.” And I knew. The NICU fell silent. So, during my pity party a baby had died. And that just seemed like the unfairest of unfair things to ever happen to anyone.
An hour later, our sweet red-eyed NICU nurses welcomed another emergency transport. Another miracle. Another life to save. And the hum of the NICU continued, but not without all of us there knowing the NICU never makes promises.
There were the moments of sisterhood, too. As another mom and I shared our stories at the scrub-in sink, what began as two strangers washing away germs turned into a genuine friendship that continues, four years later. Who knew that the nasty smelling hospital soap could bring someone that amazing into my life? God, that’s who.
The NICU club isn’t for sissies, it’s for fighters. Time to dig out your big girl meshy panties and pony up, ladies. I wish I could tell you that your baby will be fine or that you’ll be home in a jif. I wish I could tell you that prematurity won’t have lasting developmental effects or that you won’t suffer from PTSD. Every journey is different. Every baby, every hospital, every specialist, every outcome – they’re all different.
As I look back on our journey, four years ago, I see a changed woman in the mirror. I see one who is determined to be an advocate for her son. I see a mom who has a deepened appreciation for life and greater empathy for difficult situations. I see a heart full of gratitude. I see a survivor, who also really needs to get more concealer.
While the world gives a nod to National Prematurity Awareness Day today, all I have to do is look into Luke’s eyes and know it’s true meaning. Prematurity can happen to anyone. But it doesn’t have to define who you are or who your child will become. Dream big. Order that 2T shirt that you know won’t be worn for months, maybe years. Stand up to a specialist. Trust your instinct. And love that baby with all you’ve got.
As one of my favorite artists, Brandon Heath, sings, “Love is right here. Love is alive. Love is the arms that are holding you. Love never fails you.”
It’s true. Wipe away the tears and know that you are not alone. So many of us have sat in that NICU rocking chair thinking the same things you fear and hope and know and want. We get it. Now, go love on that baby.
A NICU Mom Who Has Your Back