Tuesday, January 28, 2014

The hardest conversation I've had with my child - our talk about death.

It's a day I will never forget. This summer, Little Miss M came to me in tears. She curled up in my lap absolutely sobbing. I finally got her sobbing calmed down enough to understand the words she was trying to get out. "I don't want to die." Those five words stopped me in my tracks. What was my precious seven year old asking me? I had to have her repeat herself. "I'm so scared, I don't want to die". My heart was breaking for my precious little girl who attacks every day with a giant smile and positively exudes happiness to all those around her.
I calmed her down, eventually distracted her and she went on to play like nothing had ever happened. But, I was wrecked. I trembled as I contacted every doctor and therapist who has ever worked with her. The problem was she had been pretty sick for weeks before this had happened. She's spent the majority of her young life in and out of hospitals and doctor's offices. Little Miss M isn't dying, but many of the conditions she has carry their own substantial fatality and mortality rates. She's a thoughtful and insightful little girl, and when she says big things like this, it's usually her way of trying to tell us something is wrong.

Each and every person asked me what was happening around us. Had we lost a relative? Even distant? A pet? I could say with complete certainty: No, no one has died. They sent me articles and lists of books. They gave me hugs and reassurance that she was okay. Her behavioral doctor reassured us that examining death and mortality was actually age appropriate for an eight year old. It was just much more blunt because much of Little Miss M's world is black and white. I was shocked. I had witnessed the death of many loved ones, and I know I worried about losing more. But I know for a fact, I never really worried about my own mortality until a classmate was killed in a car accident in college.

It took us a few days to recover from the first episode of intense fear of dying, and then it happened again. This time, I was not so taken off guard. I believe we were actually in the hospital. So, instead of just placating her and assuring her, we talked. I didn't have all the answers, and she didn't have many questions, but I left it simple and open-ended. We are Catholic and she attends a Sunday school program (the Husband goes along as her paraprofessional). She knows the words heaven and angels. She knows what a graveyard is. She's seen Ursula die in the Little Mermaid and she's seen A Christmas Carol and the worry that Tiny Tim might. All of these visualizations have heightened Little Miss M's awareness and instead of just seeing them, she has internalized them. She feels an intense and paralyzing fear of death.

So I asked: Why are you afraid? What does death mean?

She said: "I don't want to die. I don't want you or Daddy to die. I will miss you too much if you are not here to take care of me. I don't like when you leave. Death means you leave, but you don't come back."


Yeah, so I get it now. I'm Little Miss M's big, giant, cuddly, walking, talking, consistent security blanket. Daddy is a decent substitute. She jumped from losing us (because seriously - how many Disney princesses actually have their parents?) to losing herself. She vividly saw herself being with angels she didn't know and us seeing just a gravestone. This same child who dreamed of being a kindergarten teacher, until I told her she'd have to tie the kids shoes, is thinking about concepts years more mature then she can handle.

I'm not going to say the topic has gone away, or that it has gotten any easier to talk about. We try to assure her not to worry about it. She's now very concerned about the different ways people die. I keep it really vague, because I think she's just concocting new fears. Our fish died over Christmas, and she handled that really well. Each experience changes us and builds our conversations, but I am forced to remember that one of Little Miss M's biggest struggles is properly expressing and understanding her emotions. It's true for a lot of kids who are diagnosed on the spectrum, and it's a part of our job to help them unlock things, piece by piece. To help them make sense of a world and concepts that we don't even completely understand. I'm no expert, but I hope our experiences with Little Miss M help someone, somewhere, someday.

Have you had to have one of these difficult conversations? How have you handled it? What have you said?
Share with us in the comments below, so we can help our readers.

Amanda is a mom who hopes she continues to learn as much from her children as they learn from her.

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