Accepting the Role of Dr. Mom – Part 1

24 months ago, I held my newborn in my arms. She was perfect, she was my dream come true. I was excited to breastfeed, change diapers, soothe in the middle of the night and show her off to friends. Being a mom has always been my dream – being a normal, typical mom.

20 months ago, I put my limp, pale newborn on the floor – I began to use two fingers to push her little chest. My husband placed a mask over her mouth, giving her small breaths with an ambulatory bag. I talked to her “Paige, you’re OK – just breathe – everything’s OK” I saw her eyes open a little and I laughed, encouraging my sweet girl to breathe – waiting for the paramedics to come and take us back to the place we’d be for another two months – the hospital. 

Just a few hours before, I was sobbing with my sweet girl in my arms. I was mourning the diagnosis we had just received. I was overwhelmed that she had a tube in her nose. I was terrified that if I left the room she’d stop breathing. I was overcome with dread of the plane ride home. Fear, anxiety, hopelessness – so I simply turned on my favorite dance music, bounced with my crying baby, and let the tears fall. 

The role of taking care of a medically complex child is one that I never expected – I never wanted. I’ve heard of parents who walk away because “that’s not what I signed up for”. I didn’t sign up either – I never saw my name on that list. That’s something that happens to other people, and they’re capable of it. They’re made for it! Me? I’m just a mom – I know how to change diapers, I don’t even know what a tracheostomy is. 

That night, while Paige’s parents – John and I – did CPR on her – I knew what I had to do. I had to become something I never imagined. A nurse, a doctor, a wife, and a mother – all in one. 

Emotional Distance & Trauma

Something happens when someone you love is dying or is extremely sick. You have a rush of adrenaline, and you do things you never thought possible. Once that adrenaline ends, your body becomes weak – the emotions hit you – and it feels like you’re in shock. You can’t breathe, you can’t believe what just happened, and in my case, you can’t stop crying.

What happens if that situation never goes away? What happens if your loved one is always on the verge of dying? Do you just stay in that adrenaline rush? 

In our case, we chose a life saving measure – a trach – so that we don’t have to put a mask over her mouth and do CPR. When she stops breathing, we begin a process. It’s like we come robots – we do what we have to do. It’s not the adrenaline like it was before, but its emotional distance to protect our baby girl. 

With Paige’s disorder, she feeds off of just about everything, especially anxiety and fear. As soon as I become anxious and I don’t take care of it soon, her brain doesn’t react well. When she stops breathing, her body feels my tension. Therefore, being Dr. Mom means becoming emotionally distant in order to take care of her. 

Coping with Emotional Distance

This is one of the hardest parts for me. It has made me avoid, not be able to feel, and not realize the impact Paige’s diagnosis has on me. But, that’s why I have my husband – he can handle that part better, so we take turns – especially on the days where Paige is on the ventilator. I can do what I’m best at – nurture, give kisses, sing songs, and then I leave the room so that I can feel – and daddy takes over. We both know how to treat her condition, yet we’re a team – each of us does certain parts better.

This is why I write poems – it’s a safe place to feel. I can feel, after the fact. I can process what it’s like to have a delayed child, and not affect her. I can process the sound of the ventilator and my daughters limp body, without her feeling my own fear.

Emotional distance is a way we cope – the hard part is balancing emotional distance and healing – one in which we are still working on 😉 

How do I do it?

I used to be the person who thought medical parents were superheroes. I can tell you from experience that is nothing farther from the truth. God is the superhero – He is holding every bit of us together.

Paige IS my dream come true, and what I never realized is that God’s way is greater than mine – being Dr. Mom is more fulfilling than I ever thought it would be.