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I Was Asked to Leave My Son’s Hospital Room

Jamie Sumner
Special needs mom, author and blogger
07/29/19  8:00 AM PST

I was asked to leave my son’s hospital room and it was the best thing for both of us.

When my son, Charlie, was six months old, my husband left us for the first time to go to a football game four hours away in Atlanta. It would be an overnight trip and my first time solo-parenting. We had finally taken Charlie home from the NICU three months before, but he had a tracheotomy and intensive needs that I wasn’t sure I could handle without help. As my husband threw his belongings into a plastic Target bag, his version of packing, I did the only reasonable thing I could think of: I called my mother. I was not ready to parent alone.

When he pulled out of the gravel drive with a cheery honk of the horn that set Charlie crying, I went inside with my mom to begin the task of the evening routine without him. By eight o’clock I was fairly proud of myself. As I wrapped the heart rate and oxygen monitor around Charlie’s foot and zipped him up in his duckie pajamas, I gave myself a mental pat on the back. Look, I can feed and bathe and put my child to bed without my significant other! Then I rejoined my mom to finish our Chinese takeout and her movie selection, “The First Wives’ Club,” in celebration of strong women. Girl power. Go us.

I went to bed around ten. Fifteen minutes later, the monitor on Charlie’s foot began to alarm.

My mom, readying herself for a night on the couch, ran into my bedroom where Charlie slept in his Pack ‘n Play he would never be out of reach or out of sight. She flapped her hands in a panic. I wasn’t worried. The monitor went off all the time. He probably jiggled it loose with his foot. I got up, smiled at him, and got a re-assuring smile back as I re-taped it. See, we were fine. Three minutes later it alarmed again. On average, a person’s oxygen should hover between 95-100%. His was reading in the eighties. This was not a glitch. I phoned the on-call doctor while bouncing Charlie in my arms.

The minutes ticked by and the oxygen dipped into the seventies. I was snapping Charlie into his car seat to drive to the emergency room when the doctor called back. There was no small talk. “Yes,” she said, “get him there as quickly as possible. I’ll let them know you’re coming.” This from the woman who had told me so many times before that there was no need to panic. I drove while my mother rested one hand on Charlie in the backseat. Each time he tried to fall asleep, I told her to wake him. Some part of me feared he might never wake up again.

I left my mother to park the car and met a triage nurse waiting in the ER. She put a stethoscope to Charlie’s chest for no longer than one heartbeat and then whisked him away, still buckled in his car seat. She ran. She ran away with my child and all I could do was follow in my house shoes.

When she unloaded him on an impossibly huge hospital bed, all I could think was, surely not all hospital beds were this big? He cried when a team surrounded him. It was his first cry of the night now that he was fully roused and being stripped and stuck with sticky pads that hooked up to wires that hooked up to machines that all made it harder for me to get my hands on him.

It was the cry that did it. I stepped forward.

I pushed past a resident, leaning unhelpfully over the bed with a clipboard. I put my hands on his forehead, the only available place. He quieted a moment when he saw me, but somewhere in the room an animal began to wail. No, not some animal, me. I was wailing. It came out of me like a held breath and it was then that the nurses and doctors closed ranks. They assumed, and rightly, that I was in shock.

A social worker requested that I step outside. “Would you like some juice? Maybe some animal crackers?” she asked. I stared at her, wondering why she was offering an after-school snack when my son couldn’t seem to breathe. I refused her food, her tissues, her stiff blanket. As they hooked him up to a ventilator, effectively silencing his cries, all I could wonder was, what was happening? And why could I not be a part of it?

It was just after midnight as I watched the doctors work on my son through the glass doors they had slid shut to keep me from him. And though my mother was by my side and my husband was en route, I had never felt so ineffectual and so alone.

Charlie is seven now and only recently have I begun to view the scene with a smidgen of perspective.

They needed me out of the way so they could treat the virus that could have been deadly to a kid like Charlie. They didn’t need the mother wailing over his bed. He didn’t need that either. He needed me to step back and let the doctors do their work. I should have accepted those crackers.

But there’s a comfort in doing, even if all you can “do” is cry at the bedside. We all want our kids to be safe, to succeed, to find health and happiness. And we want to believe we have a modicum of control over it. Because if not, what are we even doing with all our time and energy and worry? But circumstances have a way of forcing us to make room. It’s scary, terrifying really, to let go of what we thought we could do on our own—turning over the care of a child or an aging parent or even our own mental health to someone else. But sometimes the best thing to do is throw your hands up in surrender and get out of your own way. Leave the room, so to speak. You’re not jumping ship, you are simply making space for the right people at the right time.

child with special needs

Jamie Sumner is a special needs mom and author.

Discover her new book, Roll with It.

Follow her on Facebook.


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