How Do You Tell Your Daughter She Has to Have Brain Surgery?

How do you tell your 10-year-old daughter she has to have brain surgery? 

There’s not really any good way. But, we did it with the doctor,who explained to her (in simple terms) the medical reasons why she needed to have brain surgery for Chiari Malformation. And of course my daughter began to cry out of fear and anger — and she wouldn’t let me or her father comfort her. There was nothing we could say that would make her feel better. So, I stopped trying to make her OK with it.

I said, “Excuse me, we just need a minute” to the doctor, and I got down on my knees so I was looking, through my own tears, into my baby’s eyes and I said, “Shea (pronounced Shay); it is OK that you are angry and that you are sad about having to have this surgery. It is not fair! Actually, it sucks… And, honestly, it pisses me off and I bet you feel pissed off too!”

My daughter stopped crying for a moment and she looked at me, and I asked her, “Are you pissed off?”  She hesitantly nodded her head, and I went on: “We need to work out all this anger when we get home. How about if we punch and kick your pillow?” She shrugged her shoulders, and I said, “OK, you think about it and see if you can think of any other ideas to get rid of this anger while I finish talking to the doctor.” I took her hand and squeezed it, and I looked directly into her eyes again and I said, “Everything will be OK.”

Now mind you, this is not how I would normally speak to my daughter. I try not to swear in front of my children, let alone ask them if they feel pissed off. But it was how I was feeling and I figured it was likely how she felt as well. The doctor kind of looked at me funny, and we continued our conversation. I wanted my baby girl to know I understood the seriousness of what she was feeling, and I wanted her to know she was the most important person in the room to me at that moment in time. I’m sure I shocked the doctor and my husband, but being so honest allowed me get through to her at the moment when she needed me the most.

My daughter’s defense mechanism has always been to just shut down. I recall a time when she was an infant, and she was miserable and crying uncontrollably. After a few house of trying to comfort her, rock her, sing to her and just love her, I became frustrated and I put her in her crib, turned on her mobile and fishy aquarium toy and shut her bedroom door. Within minutes, she was fast asleep. She just wanted to be alone.

So, over the years, out of necessity and practice, I’ve learned how to communicate with my daughter as she’s faced multiple surgeries. I’ve developed a technique where I say out loud what I think she may be thinking. For example, “You know, most kids who need to have surgery feel angry and afraid, it is normal to feel that way sweetie.” And, “I bet you might have some questions about this surgery, and I am here to help you get the answers when you are ready.” As I speak to her in this manner I make my way closer to her and then I put my arms around her and say, “I wish that I could do this for you baby. It stinks, it is not fair, but I promise I will be right here with you every step of the way.” And as her tears softly begin to fall, I feel her body begin to relax and she leans into me. “Shea, you are braver than most adults I know… do you know why?” And she looks up at me through her tears as if to say “Why”? And I say, “because being brave means doing what you have to do, no matter how scared you feel. And you are always a surgery rock star! And, don’t forget… surgery equals shopping and presents!” And that usually gets a little smile out of her. Yes, I spoil my children when they need surgery… and I don’t care.

After we lightened the mood a little bit, Shea told me she had an idea that would help her get rid of her anger. She wanted me to duct tape a pillow to her foot so that she could kick over one of the dining room chairs while wearing her younger brother’s karate Gi. So, that’s what we did! She kicked the heck out of that chair, and I helped her do so! 

Some people might say we should have taken her out of the room while we spoke to the doctor about surgery — and maybe we should have. Live and learn. But over the years, as parents of two children with special needs, we’ve learned the best way to tell our children about doctor’s appointments, medical procedures and surgeries is to be honest with them. “Will I need to have a shot?” my kids ask before going to the doctor when they were younger. And if they did, I told them “Yes.” And if I didn’t know, I told them, “I don’t know.” And if I knew they didn’t need a shot, I would tell them, “Nope, no pokes!” And as a result, we gained their trust.

When children are facing a medical procedure or surgery, they often imagine things to be much worse than they actually are. But because we’re always honest with our children, we can always say with confidence, “Have we ever lied to you about your health or any medical treatment related to it?” And they always respond “No.” And we say, “And we never will.” And then we move on.

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