The Connections We Make as Parents of Children With Chronic Illness

I had a discussion with a wise, dear friend recently about loneliness. She says sensitive individuals can feel alone even when surrounded by friends. We are each alone in our experiences. We can be living through the same joyful or traumatic events, but how we process and feel these events is ultimately our own.

My 15-year-old son Collin has a chronic illness and has spent significant time in the hospital. Walking through that as a parent, I am finding that I have never felt more alone, and simultaneously I have never been more aware of connections we have with the people that cross our paths. If we pay close attention in our world, we will find that we are never truly alone. There are connections that happen in everyday interactions, some of which become cemented in memory forever. I don’t know that I believe in fate necessarily, but I am finding that I believe very strongly that people cross our paths for a reason.

There is a silent understanding in the halls of a children’s hospital. I believe there are three fraternities of families, and if you pay attention you can easily see this. The first group is made up of families who are at the hospital for an appointment, maybe there for the first time. These families are showered and dressed and carry purses or jackets. They have plans for later in the day. They go directly to their appointment and only quickly glance at the children with IV poles or no hair. Maybe they allow themselves a brief moment to imagine “what if.”

The second group of families knows worry. Their child has an illness that requires inpatient care or surgery. They have watched their child have painful or scary procedures. They know what it’s like to sleep in a chair at their child’s bedside. They also know their current nightmare will be over soon, and normal life will resume.

The third fraternity is of families of children with chronic, long-term, potentially life-threatening illness. These families have spent countless hours, days or weeks in the hospital — either all at one time, or they are frequent flyers, spending weeks or months at the hospital in total. These families know a piece of you without even having any conversation. They look at your visitor’s sticker on your shirt and they know what you are living. Enough time there, and you get to know what the different floors mean. At our children’s hospital, if you are on the fifth floor, you have a baby in the NICU; if you are on the seventh floor you have a critically ill child in the PICU; the ninth floor is oncology, and the 12th floor is neurology. If your sticker says one of those floors, you are looking at a long road ahead or behind.

These families know the child life staff (people hired to make life easier for kids in the hospital), and the staff in the playroom, cafeteria and front desk. They know all the nooks and crannies and special, safe places in the hospital. These families know true fear and uncertainty. These families have seen a child code (either in a room near their child, or terrifyingly, their own child). These parents have collectively held their breath until the code ends, and then thankfully kissed their child in the bed next to them. There is an empathy and understanding when these families pass in the hallway or elevator.

I have been trying to pay attention to these connections lately. When my son was in the hospital recently, I kept crossing paths with another mom. The first time we ran into each other was in the elevator. She looked at the sticker on my shirt and said, “How’s 12?” She clearly knew what the 12th floor was, and a little of what that meant. I responded with a brief comment, and she followed up by saying, “We were just on 12 for three weeks and now we’re on nine.” There was no further conversation, but I knew what that meant — 12 is neurology, and then they were transferred to nine for oncology. Her child has a brain tumor. We crossed paths several more times and I saw her beautiful toddler daughter. Those interactions are probably in my memory forever, and I try to send hope every time I think of that sweet girl.  It was a meaningful human connection.

Another recent experience has made me think about how important it is to pay attention to our everyday connections. We are trying hard to manage symptoms for my son so he can be as functional and pain-free as possible. We had started to look outside of traditional medicine a bit. I had considered acupuncture, but my son was reluctant and the cost can be prohibitive, so I had not taken much action. My friend’s daughter plays a club sport, and my friend was talking with one of the other moms from the team and discovered that she does acupuncture. My friend shared Collin’s story. This other mom also has a child with a chronic illness and likely understood our need on a different level than most. Without ever meeting us, she decided to offer acupuncture for Collin and write off the cost of his care entirely. These paths seem like they were clearly meant to cross.

Imagine if we start paying attention to everyone we meet. Imagine if we get to know their story a little, how it might impact our story. Imagine how much less alone we might feel. What if we open ourselves up to possibility, if we focus less on our busy lives and what we are doing next, and start paying attention to the moment we are in? It seems to me that we will have so much more empathy and compassion. We will learn so much about ourselves and others. We will have more support and compassion given to us when we need it.

Imagine how our future could change if we open ourselves up to these connections. Even better, imagine how we could change the future of others.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.