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The NICU Memory That Shaped My Perception of 'Normal'

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One of the most lasting memories from our NICU journey is something I still think about often. I replay the scene in my mind and, like most of those memories, they transport me right back. I can hear the monitors beeping and the slight whooshing sound from the ventilator as it forced air into my son’s tiny body.

I see him there, lit up under a bright light in a dark, quiet room. Needy, frail, sick. Pencil legs and transparent skin. Our little Avery.

It’s not only the sights and sounds that are brought back, it’s the conversations we had, too.

This night in particular Avery was behaving himself. We got to touch him as our favorite nurse did his diaper change and even held the thermometer in place to check his temperature. I remember well because it was this nurse, this beautiful soul, who first trusted us enough to teach us these things. He was still tiny, under a pound and a half at the time. Arick, more faithful than I was for the entire NICU stay, looked down at Avery and joked that soon Avery would be cutting the grass and taking out the trash. My head snapped, “He will not be cutting any grass and taking out any trash! No!” His innocent joke turned me into sad, depressed, mess Steph. How could he say this tiny baby would have chores? How could he expect him to do things other kids are expected to do? How could he imply that he’d be “normal?”

Who knew that little conversation would haunt me so? That it would cause me to examine myself on a level that made me so uncomfortable?

Prematurity was just the first card Avery was dealt. Within 18 months he was diagnosed with cerebral palsy and a rare brain malformation. Both seemed completely unrelated to his prematurity. He also had polymicrogyria.

We learned pretty quickly that Avery’s life would be far from “normal.” In fact, we’ve flown by the seat of our pants. We can’t tell you what Avery will and will not be able to do. A year ago I may have said, “He might not ever walk.” But now he runs. Differently and a little sideways; and he falls a lot. But he runs!

Little boy standing on his backyard, wearing a green shirt, tan shorts, white socks, white leg braces, and white shoes. he is looking to the side, smiling.

I was forced to do something that I really didn’t want to. I had to define a new “normal” for us.

This is what I learned:

Our normal is clearing airways when your son chokes and gaggs on most foods. Our normal is not sitting up until 18 months and not walking until days before your 3rd birthday. Our normal includes neurology, gastroenterology, pulmonology, ophthalmology, physical medicine and rehab, pediatrician, physical therapy, occupational therapy and speech. Our normal is AFOs and SMOs and hand braces. Our normal is aspiration pneumonia, surgery and hospitalizations. Our normal is a 3-year-old who is just beginning to communicate his needs but still can’t tell you if he has pain. Our normal is ARD meetings, IEPs and the preschool program for children with disabilities. Our normal is fear and tears and fight. Our normal is analyzing every single thing he does because the chances of him one day having seizures is greater than the chance he won’t. Our normal is watching your child do things you thought they never would. It’s worrying when they’re sick and stressing about every cough. It’s feeling isolated and alone and like you have no one in your corner. Our normal is Avery.

I decided from day I would not place limitations and labels on him . Who am I to say that he shouldn’t or that he can’t take out the trash? Or clean up behind himself? Or finger paint or do the things typical 3-year-olds do? If I tell him he can’t, perhaps he never will. I’ve resolved to never use the word can’t with him. He can and he will, whether he needs accommodations or he can complete the task alone. I’ll never tell him he isn’t capable. If he was capable of surviving everything he has, taking out the trash will be nothing.

That one conversation brought all of this. I think about it quite a bit because it was a moment that my tough façade crumbled and you could see the weak person hiding behind it. I’m ashamed of that fear I felt but at the same time I’m grateful it happened because of the growth it led me to.

And as soon as Avery outweighs the bag of trash, he’ll be taking care of that.

Along with anything else he wants to tackle along the way.

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Originally published: April 26, 2017
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