How I Learned to Stop Being My Son's Nurse and Start Being His Mom

I’m a nurse and a mother. For many years, I prided myself in keeping the roles separated. Sure, both are caregivers performing tasks… but as a nurse, I distanced myself emotionally from patients. It was a form of self-preservation, a manner of coping that enabled me to help people. I felt like a superhero by day and vulnerable mother by night.

My worlds collided on December 9, 2014. My third son, Donovan Grant, was born with Pierre Robin Sequence. Donovan was briefly placed in my arms before he was taken to the NICU for respiratory distress. I was robbed of my bonding moment.

I quickly transitioned from vulnerable mother into nurse mode and emotionally distanced myself to cope with his diagnosis. I put my game face on and prepared for battle. I became task-oriented and introverted. I avoided contact with friends and family. I turned away visitors and opportunities for “company, a listening ear.”

I said I needed to focus on Donovan’s health, but I was afraid. I feared I would see pity in their eyes. How often had I, as a nurse, done the same when caring for families of special needs children, looking at them with pity? I feared they would see the flaw in my armor.

I buckled down and consumed myself with Donovan’s biggest hurdle: eating. I obsessed over small volumes. I found a sense of calm in my focused state. I was a great nurse and we were rewarded with an early discharge from NICU in time for the holidays. As the NICU nurse walked us out with Donovan’s apnea and cardiac monitors, I lost it. The wall I had built up began to crumble… reality settled in.

I wasn’t clocking out of a shift; I was taking this patient home. He was my son.

Fast forward to three weeks later when we had our first appointment with Donovan’s craniofacial team. I fully anticipated we would schedule Donovan’s cleft palate repair by 3 months of age, after which he would be “fine” and we could get on with scheduling summer vacations and “normal” family life.

Reality check…

We left the appointment with an open-ended plan to “tweak” Donovan’s feedings and return to the clinic in a month. I cried. I was disappointed. I was confused. I was selfish. I’d invested so much hope in this follow-up. I had been naive. I thought we’d be rewarded with an “end in sight,” a scheduled date I could mark on the calendar as the return to normalcy for our family. January 6th was a memorable day; it was the day I grieved the normalcy that “had been” and realized life would never be the same.

I’d been shell shocked, and the days that followed only got worse. The ENT called us the next day to check on Donovan. He said he was genuinely concerned and advised that we admit Donovan to the hospital for airway management.

We packed for a weekend getaway. Donovan ended up in the hospital for thirty-five days. The initial intervention was unsuccessful; Donovan needed surgery. Our ENT proposed a procedure that was fairly new and innovative; he said he had discussed Donovan’s case with his mentor after our first meeting. He said when he looked in Donovan’s eyes he saw fear; Donovan couldn’t breathe. He deserved a better quality of life.

I was overwhelmed with fear and guilt. The past three weeks I had been Donovan’s nurse; I’d been task-oriented and emotionally distanced. I felt I’d failed him as a mother. I’d been in denial, too scared to tear the wall down and connect with him. I allowed his condition to obstruct our relationship. I was afraid to feel, afraid to be vulnerable in the face of something I had no control over. I was afraid of his diagnosis. I was afraid to be his mother.

Donovan was on a ventilator for 6 days. For what felt like an eternity of time I sat vigil at his bedside as a mother. I could no longer provide him the nursing care he needed. I jumped headfirst into the tide of emotions. I cried, I questioned, I bargained, I cursed.

I grieved everything that was and everything I had envisioned our future to be. I forgave. I accepted.

The day Donovan came off the vent was like a rebirth for us. Donovan took his first breath, I heard his first cry, and they placed him in my arms. I lived in the moment. I took him all in. I embraced the fear of uncertainty. This time I was ready to battle disability and disease, not as a nurse, but as Donovan’s mother.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.