It's OK to Cry When Parenting a Medically Complex Child

“Hey Scott, did you know your shirt’s inside out?”

I wake up just about every morning at 4 a.m. That day was no different. After throwing on my clothes, I aimed to 7-Eleven for a monster Diet Coke. I’ve known Margret for quite a few years. She has watched me travel down a road with its share of brokenness. And yes, some huge joys. Margret is the midnight shift worker at the convenience store.

A bit confused, I asked her, “so how did you know my shirt was on backwards?”

Margret replied, “because I could read the label on the collar of your shirt.”

“Scott, it’s inside out,” she repeated.

Before I jumped back into my truck I flipped my shirt over, one arm at a time. Luckily it was still early and I was the only one in the deserted parking lot.

This past week when I was jumping into my truck after my work as a parent mentor at the children’s hospital, I couldn’t help but think about the conversation I had with one of the moms I guide.

“So Jan, is it OK to be sad?” I asked.

Jan is a mom I met many years ago during the month of February. Both our kids have heart disease and we were attending a family Valentines event for heart month. Even though my son died a few years back her boy is still doing life. But now the disease monster has popped up again but not in a way her family expected. Now it seems like he may have a cancer or a life-threatening blood disorder.

“No, I can’t be sad,” Jan answered. “I have to be a good mom for my son. If I allow myself to cry or get sad it will bleed out of me and effect my family in a bad way.”

“Well, is it OK to cry?” I asked.

As Jan shifted in her chair, I said, “Sometimes a mom will tell me she cries when she in the bathroom, when I ask the question. Other times it will be a dad pointing out a window and stating, ‘Sure Scott I cry. I cry when I’m sitting in my truck out there in the parking lot.’”

“So Jan when do you cry.” I asked.

“I don’t cry,” she insisted.

The next week when I returned for my work in pediatric palliative care, I stopped by to see Jan again.

“Yes, it’s OK to come in,” she said.

Before we got past the “so what did they say at rounds today?” she interrupted.

“Scott, I am so angry with everything that’s going on here.”

“Like what?” I said

“The nurses the doctors and even my son. They won’t give me a straight answer.”

I was sitting on the blue couch I knew she had probably slept on for the last two months. Jan was sitting in a worn, tan recliner I knew was the place her husband slept when he was doing his shift. It was a sunny day in early October and the sky was blue; the Ronald McDonald house was in view from our seventh floor perch.

It didn’t take long for our conversation to narrow again to the place about sadness.

“My daughter’s prom is tomorrow and I don’t know if I will be able to go home. I want to help her with her makeup,” Jan explained. “I don’t want my daughter to feel like she has to be the housekeeper and cook at her age.”

Before she could say another word her face started to take a different shape of beautiful. It appeared her cheeks were being tugged up to the bottom of her eyelids. Her head was slightly bowed. And that’s when I knew it was time for me to bow my head and not speak a word.

As the moments ticked by, she raised her right hand with her index finger pointed up. She didn’t have to say it; I knew what she was signaling “Just give me one minute, Scott.”

After about three minutes, I whispered, “It’s OK.”

Again, she raised her hand.

I said, “Jan you’re not crying, you’re just faking it.”

In that small room on the oncology floor on a Wednesday afternoon, Jan smiled. And yes, Jan cried too.

In the next half hour or so this mom cried, or what I would repeat to her, “fake cried,” two more times.

As we continued to talk I asked about her coping mechanism. She told me again how angry she was. It wasn’t too long into the conversation that Jan seemed to have an aha moment.

“What is it?” I asked.

“Scott, I think by not being sad, I’ve allowed anger to take its place and that’s not a label I want to wear.”

“Did you ever cry when you were sad as a child?”

“Nope,” Jan replied.

Because I know Jan and her family well enough I said, “So how’s that been working for you?”

Jan winced and said, “I guess it never has.”

So, when I got up this morning and went to 7-Eleven like usual, I couldn’t help but think of the conversation Jan and I had. I remember the story about my shirt being inside out and how Margret said, “I knew it because I could see your label so clearly.”

The next day after I met with Jan, she sent me this heartfelt text.

“Thank you Scott. I just wanted to let you know that I felt so much better today and I think it is because you made me (allowed me) to fake cry!! I am home now to be with Laurie for the weekend and Mitch is with Edison. You are doing good work in your lifetime, thank you for helping me through this journey.”

(Yes, that made me cry too.)