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Sick Child
Sick Child: What Not to Say After a Serious Pediatric Diagnosis

I will never forget Andy. We were neighbors and had children the same age, so our paths crossed regularly.

When my three-year-old son Nathan was diagnosed with a life threatening brain tumor, we made immediate plans to fly from Santa Fe, New Mexico, where we were living, to New York. Santa Fe is blessed with beautiful blue skies, clean air, cultural richness, but when you are facing a medical crisis you look for the largest pool of medical experts you can find.

Word spread quickly that the unimaginable had struck our family, and we began receiving calls, cards, and visits from friends who were in shock. Of course they wanted to help, but most arrived without a clue about what was really needed. They offered tears, hugs, and a lot of words as if chatter could make it go away. One friend who was a teacher came in the house, burst into tears, sat down and began to list all the services that schools offered for disabled children. If Nathan ended up blind, there was this program. If he ended up mentally impaired, there was another program. The list of horrible “ifs” was endless, each with its own program that we should be grateful for. This was forty years ago, and it still upsets me to remember. I wish I had been able to turn her off, to say, “This is not helping. Please stop,” but in that state of deepest vulnerability it is hard to muster those self-defense mechanisms.

And just for the record, the other kinds of offerings that are not helpful include:

  • Pointing out that it could be so much worse, because in that moment it cannot be;
  • Proposing that perhaps this is part of the grand scheme and that there is a silver lining somewhere, that this is a wonderful lesson in something that will become clear to us some day;
  • And a variation on this theme, above, suggesting that Nathan’s tumor is part of his past lives legacy, that this is what he “needs” to experience, to endure. (This is where I am glad that I don’t own a gun….)

Many came with food which I think is probably a good idea if there are extra people around, relatives who have come from elsewhere. But we were alone and it felt like a burden to have to thank, then store, then eat, then wash the dish, remember who brought it, return it and say thank you again. I understand that people want to do something, and feeding is so basic.  I appreciated the effort, but would have appreciated it more if the containers had been cardboard cartons, foil packages or ziplock bags. Then we could just say thank you, store it and eat it. The end.

Parents of Nathan’s friends came with particular angst. What if their child had a brain tumor? What if little Jenny or Billy were one in 300,000 like Nathan? And after waiting what I’m sure they considered a decent amount of time, the subject inevitably came around to those early symptoms of the brain tumor. What did we first notice? And when I said that his eye was wandering and we took him to the eye doctor, I could see their panic as they wondered how soon they could get an appointment.  I hated that moment.

I also felt branded in some way, almost like a pariah. People were drawn to me for good reasons of wanting to help, but they were also repulsed, terrified by the reality that this unimaginable had struck someone so close to home. I was that embodiment. I was everyone’s worst nightmare, which is not an easy role to play.

And then there was Andy. She appeared at the door with a small plastic bag. Her face was stricken. She didn’t need to say anything. I knew she knew and she was devastated. She didn’t ask to come in, and I didn’t invite her in, just being too raw and exhausted. She handed me the bag and said, “This is all I could think of. It’s a bottle of Valium and my American Express card.”  I melted. There was something so sensitive, so practical, so direct and simple about this expression. She didn’t need to say or do anything else. We hardly ever see each other anymore, but when I do, I remember that moment when she appeared and offered what she could, with few words and a lot of love.

 


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