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 there. I can hear the monitors beeping and the slight whooshing sound from the ventilator as it forced air into his tiny body. I see him there, lit up under a bright light in a dark, quiet room. A beacon of helplessness calling out to me. Needy, puny, sick. Pencil legs and transparent skin. Our little Avery. It’s not just those sights and sounds that are brought back. It’s the conversations we had, too. The ones Arick and I had late at night, huddled together in front of his isolette doing the only thing we could: look at him. Or the ones we had with some of the many parent friends we made. The quick, hurried meetings with a neonatologist or neonatal nurse practitioner or the late-night, personal exchanges between us and the many nurses we fell in love with. And that is where this particular memory lies.
We grew extremely close to some of Avery’s nurses. Probably too close, at the time. One in particular- she will know who she is when she reads this- became what I can only describe as our safe place. When we’d walk into the NICU at 8 PM and she was there, we’d exchange a knowing look and smile. She spoke to us like we were Avery’s parents and trusted us to begin helping with his care when he was ready. It’s so easy to get lost in the meticulous nature of caring for a micro preemie and not realize that these two people standing before you are this child’s parents. The nurse is, in all honesty, the parents’ #1 source of information and support. We found that there were nurses who did what needed to be done and moved along and then there were nurses like her. Those who asked us questions and listened while we asked ours, answering them to the best of her (or his) ability. With her, we just clicked on a different level. We grew to love her. That isn’t to say that she was the only one we treasured. There were many nurses at CLRMC like her. We were blessed with a fantastic team. We owe them our son’s life. Unquestionably. But her…she was special to us.
Arick and I spent hours every night standing, sitting, praying, holding each other and just staring at the tiny little boy we’d created. It was all we could do. There were many days when I didn’t think he’d make it. When I’m sure even THEY didn’t think he’d make it. We’d stand over him and talk about the future because it was the only way I actually believed that he would have a future. We’d joke, play and talk to Avery the same way we always have. Our unique, quirky senses of humor kept us going. Laughing to keep from crying? That type of idea. And we did laugh. Between every single tear.
This night in particular Avery was behaving himself. We’d gotten to touch him as she 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 begin teaching us these things. He was still tiny, under a pound and a half at the time, so as quick as we started he was back fully secured in the safe warmth of the closed isolette and we went back to our conversation. Arick, more faithful than I was for the entire NICU stay, looked down at Avery and did the unthinkable. He made a joke that soon, Avery would be cutting the grass and taking out the trash. My head snapped upwards- he’s over a foot taller than me- so fast I’m surprised I didn’t get whiplash. “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 that 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?
A few minutes later his nurse came back by to check on him and we asked her opinion. If anyone was qualified to end this debate it had to be her. “What do you think?” Her answer pulled the rug out from under me.
We didn’t debate it any more that night. I mean, I knew it was really me that was right. It’s a simple task- taking out the trash- an easy idea. But goodness all the internal conflict I’d have over it across the next year. 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?
Well, I can say it now: he was right.
Prematurity was just the first bad card in the mess of a hand that Avery was dealt. Within eighteen months he’d be diagnosed with cerebral palsy and a rare brain malformation to boot. Both completely unrelated to his prematurity and congenital. If you look at his chart, that inches thick book with the myriad of problems listed, and marked off prematurity, no one would even notice. He has virtually no medical problems that can be tied directly to it. But polymicrogyria? Go ahead and bold that word. So we learned pretty quickly that Avery’s life would be far from normal. In fact, we’ve flown by the seat of our pants from that very day. 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. Awkwardly, and a little sideways. And he falls a lot. But boy does he run! So that little word took on an entirely new meaning to me. I was forced to do something that I really didn’t want to. I had to define normal for myself. This is what I learned.
Normal is clearing airways while your son chokes and gagging on most foods. Normal is not sitting up until 18 months and not walking until days before your third birthday. Normal is neurology, gastroenterology, pulmonology, ophthalmology, physical medicine and rehab, pediatrician, physical therapy, occupational therapy and speech. Normal is AFOs and SMOs and hand braces and diapers until the end of time. Normal is aspiration pneumonia, surgery and hospitalizations. Normal is a 3 year old who is just beginning to be able to communicate his needs but still can’t tell you if he has pain. Normal is ARD meetings, IEPs and the preschool program for children with disabilities. Normal is fear and tears and fight. Normal is analyzing every single thing he does because our only real certainty is that the chance that he will one day start having seizures far outweighs the chance that he won’t. Normal is watching your child do things you feared they never would. 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. Normal is Avery.
So I had to think…I knew what my definition of normal was. Now I needed to decide what Avery’s would be. And the cold, hard truth? It’s going to be whatever we make it. I decided from day one that I didn’t want him to be different. So why would I place limitations and labels on him when the world is already going to do plenty of that? Who am I to say that he shouldn’t- that he can’t- take out the trash? Or clean up behind himself? Or potty train or finger paint or do the things typical three year olds do. If I tell him he can’t, 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 that it happened because of the growth it led me to. So to that nurse, the one who knows who she is- thank you. You made so many of our hardest days bearable and your love and devotion to Avery made you irreplaceable. I hope that you know, even today, what you mean to us.
You’ll be pleased to know that, as soon as he outweighs the bag of trash, he’ll be taking care of that.
And anything else he wants to tackle along the way.