Inspiring Lessons of Connection from Parents with Critically Ill Children

The past few days, I’ve had a chance to see both the best and worst of humanity. The stark contrast presented by a unique week of interaction has me pondering the importance of connection, personal power, fear, and our contributions to our own misery.

Okay, admittedly that’s a lot of territory so, for now, let’s look at the best and see if there’s anything we can learn that will help us improve the quality of our lives so that our families can thrive.

My week started with a photo shoot of several families who have children that are critically ill, injured, or have recently received a transplant. As I asked each family if they were having a good day, I received varied answers. One family’s son had just had his chest tubes removed after his third open-heart surgery. He is three. The mom told me that she was grateful to have learned it doesn’t matter what color your skin is. When you are told your child may die, it only matters who you are and what’s in your heart. A family that had arrived in town because the mom went into labor on an airplane and we had the closest airport, moved carefully because of her recent Caesarian. Her new daughter is still in NICU, she is having to shower in a communal bathroom, and her husband has been unable to start his new job. She calmly instructed her 3-year-old son who has to wear his blue sweater several days per week because there’s been no chance to locate other clothes. She wasn’t much for talking; her quiet smile said it all. One young mom wrestled her 4-month-old son who recently had a heart transplant. He has gorgeous red hair, a feeding tube, a mask over his face, and he cries incessantly. He was frightened by the photographer’s strobes. As he wriggled and screamed, his young mom remained relaxed and gentle with him. Her unflappable serenity shines through in the photos.

All day long, I kept expecting to see people at their worst – exhausted, frightened, struggling, hopeless. What I kept discovering was that I was seeing people at their best. They may have felt exhausted, frightened, and helpless, but what I experienced was calm strength and total presence in the moment. Without time or energy for the usual niceties or pretense, connection was natural, easy and inspiring. Over and over again, I felt an immediate connection. With each meeting of our eyes, each smile or look of empathy, I knew my presence made a difference. I felt honored, humbled and powerful.

For these families, life has been stripped down to the absolute essentials. Their challenge is to embrace each bit of kindness, joy, or relief that appears while surrounded by the most difficult of life’s realities. If they choose to spend five minutes wondering why their child must suffer when others don’t, they know that’s five minutes they aren’t fully relishing the time they have with their child. What a choice!

It’s easy for most of us to draw a contrast between our everyday lives and that of these families, but maybe there’s something we can learn from them and apply to our everyday interactions:

Because these families are painfully aware that the time we get in this life is limited and uncertain, they focus on making the most of each day. We can all benefit from this type of focus. Our priorities will then allow us to rid ourselves of the activities or friendships we have chosen that do not feed us or contribute positive energy to our lives.

While they have real reasons to worry, these folks recognize that worry is a distraction that keeps us from being present in the moment and thereby prevents us from fully connecting with each other. It is through this connection that we can give and receive empathy, care, comfort, and love. 

Although presented with heart-wrenching circumstances, the families I observed show up each day to face the situation and make difficult choices. We too are faced with everyday choices that affect our health and quality of life. Do we choose to cower in denial or do we gather our courage and make the choice that best serves our overall well-being even if that’s not the easiest choice?

In the role of parent, the adults recognize that they must function as adults. If they weep and wail and act helpless, their children will become frightened. If they are disrespectful to the nurses or staff, they may inadvertently jeopardize their child’s care. If they decide that they just can’t handle the stress of the hospital, their child will be left alone. These loving parents do not choose to burden their children with adult matters so they summon their best selves and find the strength to cope with each difficult day. How often do we fail our children by neglecting to summon our inner strength to set and enforce limits on sugar consumption, screen time, rude behavior, or frivolous spending?

When parents are separated for days or weeks by taking shifts to provide a continuous presence in a child’s hospital room, the importance of adult time to connect without the children cannot be taken for granted. Are we remembering to value our connection with our partner? Do we make time and space for connection on a regular basis? Do we present a united front to our children?

As days turn into weeks and the world begins to shrink to the size of the hospital room, these parents must find small ways to care for themselves and keep a connection with the larger world in order to remain inspired. There is no energy to feel guilty for a few “selfish” moments; in fact, there’s a realization that feeding their own spirit is not just important, but critical. Some of them make sure to take a walk and watch the sunrise or sunset. Others read a book that allows them to empathize with the characters. Some schedule a meal out once a week so they can get out and people-watch. Some moms just take a long bath and a nap or get a massage. Do we measure our worth in self-sacrifice that causes us to lose our identity or feel guilty when we take care of our spirits?

This week in the midst of tragedy, I had the privilege of seeing the best. I also had the experience of seeing the worst. This contrast reminded me that life-changing events are a chance for people to reveal their real character. Sometimes you learn that your partner, sister, aunt, mom, or dad is too fearful to be supportive, too needy to put another’s interests first, too interested in comparison to have compassion, or too threatened by real connection to let down their walls and be there for you. Can we have compassion for their weakness and the courage to let go of our expectations of more from them so that we can recognize and be open to receiving what we need when it presents itself? 

When we allow ourselves to see the truth, we may be faced with other difficult life decisions. Can we be grateful for a chance to face our fears, embrace grief, loss, and change in order to move forward and heal ourselves?

While we may never have a critically ill child, we will all face trying circumstances. Some of us will choose to live in chaos, pain, worry, and dissonance without ever recognizing that we’re making a choice. If you are struggling at the moment, can you tell yourself the truth and begin experimenting with tiny changes in your behavior? Can you take inspiration from what resilient parents have learned? 

 If so, are you willing to share your story? We’d love to hear it.

Author: Cheri Thriver

Hello, Cheri Thriver here blogging about cooking, thriving, and the intersection of the two. I’ve been living a gluten-free lifestyle for over 15 years. I understand that it’s rarely a lack of knowledge or the availability of appropriate food that keeps us from making healthy choices. More often than not, it’s an emotional connection, previous trauma, or fear of social reprisal that keeps us stuck. My wish is that you’ll find something here that informs, entertains, or inspires you to change anything that needs to be changed for you to live fully and thrive.

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