To My Son, the NICU Survivor: You Are My Sunshine

On the evening of September 14, just 12 hours after the dust and the chaos of the day had settled in for the night, I walked up to the NICU to see you. I sat helpless outside of your isolette watching you through the clear glass — you were too little to hold, too fragile to rock. You were wrapped in wires and tubes. Your chest pumped up and down as you struggled to take in your own breaths. Beeps filled the background. The lights became dim.

I watched you. I reflected on the day’s events. A day was filled with so much traumatic news due to you and your twin sister’s 28-week entrances.

For the first time that day, it was dark and silent. There was a glimmer of hope and peace inside me. For the first time that day, there were no doctors telling me the odds. No nurses rushing to aid you. Just you and me. My mommy heart was finally able to feel the feeling I longed for all day — love. And in that moment, I saw you for who you were, my beautiful baby boy.

Without fear for the first time that day, I reached my hand inside your isolette and pulled your knit cap back. The cap that had been hiding a bruise that covered your scalp and forehand. A bruise I had spent all day worrying about. A bruise I feared would cause delays, cognitive impairments and cerebral palsy, all of which are too common in preemies like you.

I put your cap back, smoothed out your blankets, and wrapped my hand around yours for the first time. You squeezed back. And in that moment, hand in hand, I made my first promise to you, out loud, as the moon shone through the window on both of us. I promised you that no matter what, no matter how things turned out, I would always be your biggest advocate and love you, no matter what we faced together. I would hold your hand as much as you needed me, forever.

And without pause, my motherly instinct set in and I began singing, unprompted and unplanned.

“You are my Sunshine, my only sunshine.
You make me happy, when skies are grey.
You’ll never know dear, how much I love you.
Please don’t take my Sunshine away.”

If you’re the parent of a critically ill child in the hospital, this song speaks deeply. And if you’re like me, you can barely make it through the words “Please don’t take my Sunshine away” without tears and a deep ache in your heart.

You just turned 3, my son, and we have now sung this song together every night for 1,082 nights.

We sang it every single night you were in the NICU. We sang it the night you came home.

We sang this song through all of your therapies starting at just 4 months old — physical therapy, speech therapy, occupational therapy.

We sang the song the night before visits to Shriner’s, orthopedists, neurologists, development pediatrics, development screens and more.

I sang the song until you fell asleep and then wept silently next to you on days the therapists told us “something was off.”

And we sang it again on the days physicians confirmed you had global developmental delays, caused by your preemie status.

We sang it on days that all of our other preemie friends graduated from therapy and their parents excitingly texted that “their child was all caught up.” I cheered them on while knowing that therapy would be a part of your future for a while.

We sang it on the day you graduated physical therapy and started running.

We sang it as we celebrated a “passing with flying colors” on your fine motor tests.

We sang it out of comfort on the day school became tremendously hard for you because you could not communicate at all.

We sang it out of joy again when the biggest sunshine came into your life, your Sarah, who helped you find your voice.

And we sang our biggest joy of all last month when you surpassed all of your school evolution tests.

Sweet Jack, you have become such a big, brave boy in such a short period of time. You have conquered so much.
I see strength in you that I hope you’ll never need.

Last week we snuggled in bed, reading a story. When we were done, I told you how proud Mommy was of you. How much you’ve overcome. How brave you are and how much of a hero and inspiration you are to Mommy. You have worked harder than any little person I have ever met. You have overcome so much more than I could have ever wished for 1,082 nights ago when I promised you the world.

We settled in to sing our song as we usually do. But this time it was different.

For the first time, you sang, too.

As your sweet little voice sang the words sunshine and happy, in that moment, your words confirmed what my mommy heart knew all along — you’ve got this, sweet baby.

My Jack, you’ll never know dear, how much I love you. You are the sunshine of my life. Thank you for sharing your light with me.