My child’s life has been wrapped up in hospitals since the day he was born. Ironically, it’s the place he is most at ease; he knows the equipment and routines. He’s not afraid to tell a doctor they didn’t look in his ears or to ask the phlebotomist for her tourniquet. (Relax, our answer is always a resounding NO!) He knows how to work the otoscopes and the blood pressure monitors, the pulse oximiters and the electronic scales and where they keep the disposable caps for the thermometers. It’s all just second nature to him and we don’t give it much thought.
We’ve walked this hallway what feels like a million times through the years— many of them as recently as this past week. The pictures on the walls haven’t changed, the faces are pretty much the same. It works for us– for him, the routine, the predictability and familiarity. He knows Ms. M at the coffee shop who waits patiently as he orders his “cookie chocolate” with his speech device. Mr. John, the valet attendant, who always gives a smile and a fist bump and who never, ever makes it a problem if we want to play on the playground even after the car arrives. My little ambassador knows the nurses in varying departments by name and remembers the color of the stethoscope everyone wears. Dr. C? Red. Dr. D? Black with tape. Ms. T? Green…and so on.
Today, we’re winding down from a very long morning of appointments on the heels of a week’s worth of appointments and disrupted routines. I can tell he’s off kilter and out of spoons. I’m kind of feeling the same way. It’s been a hard break at the end of the school year and he’s missing not only his routines and outlets, but his very best school friend.
Him: Marcus, today
Me: No, baby, not today. (*crack* there goes my heart breaking just a little bit more with each repetition of this exchange)
Him: Marcus, school tomorrow.
Me: No, baby, not tomorrow.” *crack*
My beautiful, loving boy. So hopeful. So resilient.
He stumbles against me periodically as we walk, loosely holding hands; I can feel his weariness. He looks longingly at the wagons of the other children going by. I silently berate myself for not getting a wagon for him; he’s tough but even he has his limits and his legs have been aching so much lately. If we weren’t in the home stretch heading off to get our requisite cookie for the long drive home, I would absolutely get a wagon.
He stumbles again and I feel him pull away from me, his hand slipping from mine. Suddenly, I’m on high alert as he darts to one side. Instantaneously, I scan the area and evaluate the possibilities of where he is heading. I see an office door tucked into the wall up ahead and dash to cut off his inevitable entry. I beat him to the door which wasn’t his target after all. His destination was something I hadn’t even contemplated.
He stops suddenly and cranes his neck upward to look at one of the many images which have become so much a part of our, my, unconscious mind. His spindly arms reach upward toward the mural – almost in supplication. One hand on the image, he is utterly transfixed. Relief washes over me. “Nik, what on earth—“ I begin. Then, I see the image on the wall. I am unable to breathe and I feel slightly dizzy. I am suddenly sucked into a vortex. Unbidden, hot tears course down my cheeks; I couldn’t stop them if I tried.
I watch as his delicate fingers reach up to touch the face of the child in the image—an infant on a ventilator. The woman – I’m assuming she’s a nurse because of the scrubs, but also because of the tender way she is cupping the top of the infant’s head—looks nothing like any of the nurses who spent so many months by our side all those years ago. Yet, suddenly, I can see their faces and hear their voices.
I can hear it all so clearly—the hum and whoosh of the ventilator, the sounds of the automated blood pressure machinery. I can hear the sounds of the gentle crooning as they shushed and soothed sick babies. And the alarms—oh, God—the alarms. I can feel the sudden, urgent energy in the room when something went terribly wrong. And the tears and stricken silence following the unthinkable.
I don’t think about those things often—seldom consciously. Yet, I can’t help but wonder at how deeply they have been etched into my psyche. How little it takes to trigger the emotions and memories.
Nik’s finger traces over the image of controls on the ventilator. He turns his head to me as if in question, but I don’t know what he’s asking. Could he possibly remember? He was so tiny, so fragile—weighing barely more than a pound of butter. Is it even possible? I can’t help but wonder. Is his sudden, reverent fascination with this particular image on this particular day because of an offhanded remark I made to a nurse today about how little he weighed and how long he was in the hospital? Does he have those visceral flashbacks, too?
I can point to specific habits and traits he has developed as a direct result of his 209 days in the NICU—habituation they call it. The way he likes to fall asleep all scrunched into a ball with his feet and head pressing against something? That’s a vestige of all those months cocooned in a bendy bumper. The way he can sleep through almost ANY sound, but cannot sleep alone in his room. The way he constantly needs music in the background of whatever it is he is doing. But, never, before this dizzying, heart aching moment, have I ever suspected he had more than hazy awareness of his time in the hospital.
I have kept my own memories and emotions so neatly compartmentalized that I simply assumed he had no real memory of any of it. It’s been easier for me to cope with my own waves of remembrance that way. The thought that he might have powerful conscious memories of his difficult sojourn tears at my heart. If I, at nearly 50, still cannot process it all without falling apart, what must it be like for him? How does he process all that happened to his tiny body and tender spirit without the layers of cognition and understanding?
I don’t have any nice neat wrap up to this story; it’s unfolding as I write. I’m processing as I go. Apparently, so is my son.