Karin and I are currently facilitating a grief group together. Whenever Karin shares, I am struck by how open she is, and can tell she’s done a ton of work processing her experience—not that it’s ever done, but she seems to me a model of how to walk through this and welcome others to share the road with her. I knew I wanted to interview her, especially after seeing a photograph of Amanda and falling instantly in love with her sweet smile.
What was your child’s name?
How and when did she die?
She died December 24, 2003 at eleven years old, of viral myocarditis. There was a nasty chest and head cold type flu going around and we were hearing of children in our area dying of it, but we weren’t worried because our kids were healthy. My four and a half year old son, Spencer, had it first, then my husband, then I got it. Amanda was the last one to get sick, she came home from school on Thursday, December 18 and by Sunday she was lethargic and vomiting. Then late that night, I took her temperature and it was really low, 93.2 degrees, so I called the hospital, but they said that was impossibly low, and to go out and get a mercury thermometer and take her temp. So my husband went out looking for one, and of course he couldn’t find one as they stopped making mercury thermometers…Anyway, he came back with a different thermometer, I took her temp again, it was still 93.2. By 6:00 AM she was spitting up bile, so we rushed her to the hospital. Once there, they determined her heart wasn’t beating correctly and decided to insert a pediatric pacemaker, hoping it would regulate her heart. When she didn’t respond as hoped they transferred her to our local children’s hospital. While in route she seized, and they did heart compressions on her for approximately thirty minutes until they could get her on Extracorporeal Membrane Oxygenation machine (ECMO). At this point the doctors were hoping the ECMO machine, along with antiviral, antibiotics and anti-inflammatory meds would help heal her heart so it could beat properly on its own. She was awake and stable, but after 48 hours on the machine, some of her organs were starting to fail. They performed a test to check for brain activity, but the results were negative. We had to make the decision to turn off the machine and let her go. She passed away six days after contracting the flu.
It’s just not the order of things. It’s so far removed from our psyches. You might know it’s a possibility, but you can’t get your mind to visualize such a horrific thing.
Did anything prepare you for this experience?
Absolutely not. Whenever I heard of a child dying it was outside of myself, I always thought it was something that happens to other people, not me. I never thought of losing a child, never.
Do you think anything could have prepared you for this?
You don’t prepare. You can’t. Even people with a terminally ill child, supposedly with time to “prepare,” I don’t think they can either. It’s just not the order of things. It’s so far removed from our psyches. You might know it’s a possibility, but you can’t get your mind to visualize such a horrific thing.
My faith. I knew she was on to her next journey, and I was happy for her that she had done what she needed to do and was free. Being human is hard, and I believe she’s in a much happier place. So my belief that her energy still exists and went on to something easier helped, but when the mother in me started feeling her loss deeper, that no longer sustained me. At that point, I joined a grief group, and that was great. We did a whole bunch of modalities—breath work, art therapy, writing. All of that helped. So did the ways I honored her. Things like on what would have been her twelfth birthday, I had her friends and family over to make stepping stones. I spent months preparing. I painted the center tiles, collected tiles and glass stones to use for the mosaic. Everyone did their own mosaic and painted and signed the hearts on their creation. Together the stepping stones spell out Amanda’s Rainbow Garden.
I also used to go to the beach every day for hours. I’d drop my son off at pre-school and head there. I would sit there and wail and cry and sing and remember her, it gave me the space to feel all of it, it got me through.
I also read a lot. Books on what happens after we die and how to communicate with loved-ones that are gone. I believe in all that stuff, which helps.
What didn’t help?
Talk therapy. I couldn’t articulate my feelings, I couldn’t find words that could aptly express what I was feeling. For me, experiential therapy approaches were best including Eye Movement Desensitization and Reprocessing (EMDR).
I now realize the sense of control we think we have is a fallacy. I’m better at surrendering to whatever’s happening in life. I’m also not bound by a calendar or a clock anymore. I’m much more free about time and space.
What do you want people who haven’t been through this to know about grieving a child?
When you’re trying to be there for someone who’s going through this, you’re damned if you do, damned if you don’t. You could say something one moment that really helps, but say it another moment and it’s awful. Whatever you do, don’t disappear when six months goes by. Keep calling. And don’t ask, “How are you?” Don’t say, “I can’t imagine what you’re going through.” Just say “I’m here, I’m listening.” Don’t feel like you have to fix it; you can’t. And know it’s going to be a very long journey, a lifelong journey.
How have you changed?
I don’t sweat the small stuff anymore. Like when my son wouldn’t finish all of his homework, I didn’t freak out about it. I now realize the sense of control we think we have is a fallacy. I’m better at surrendering to whatever’s happening in life. I’m also not bound by a calendar or a clock anymore. I’m much more free about time and space.
My relationship with God has changed, it’s more tenuous. I felt deeply hurt and betrayed because of what happened, and yet on a certain level I knew it wasn’t a betrayal, so it can be kind of a mind fuck, balancing my humanness and spirituality.
It’s also become scary to open my heart up again. I was not present to my son for the first few years afterwards, emotionally I was completely absent, and he felt abandoned. I have a granddaughter now, and I’m nervous to love her, even though I do. I don’t want to experience the loss of a child ever again.
What do you want people to remember about Amanda?
She was the kid that everyone liked. She didn’t have a single enemy. Girls can be cruel, cliquey. She never did any of that. She was kind. She never said anything negative about anybody. She had a great sense of humor. She loved her daddy dearly—they did Indian Princesses together; they went camping every month. She adored her cousins, friends and family. She was just a love, full of life, so divinely happy. Very sensitive. Strong. An artist, always doodling, like if we were watching TV she’d be on the floor with her markers. She was still a little girl, not yet into boys like some of her classmates. Still into playing with her Barbies and stuffed animals. One of her teachers wrote a poem about her and spoke at her memorial, there’s a line in the poem that still touches my heart: “She walked through life with the confidence of a well-loved child.”
I would be walking along and I would hear her say “stop, look down,” and there was always something, a heart shaped rock. One day when I was really struggling to find peace, I was instructed to stop and look down, only to find a peace sign necklace.
Do you still feel connected to Amanda?
Yes, though not so much as the first few years, when she used to come to me a lot and help me with all sorts of things, like finding the dress I wore to her memorial service. She still exists. I have access to her whenever I want. Like when my son’s girlfriend got pregnant, and we weren’t sure if he was the father, I went outside one night and asked Amanda to send me a shooting star if he was the dad, and within seconds there was a shooting star. She often left me gifts at the beach…I would be walking along and I would hear her say “stop, look down,” and there was always something, a heart shaped rock. One day when I was really struggling to find peace, I was instructed to stop and look down, only to find a peace sign necklace. Another time I was feeling playful and a little toy dolphin was at my feet.
How do you answer when people ask you how many children you have?
Generally I say two. And then if they ask the ages, I might say my son’s age and whatever age Amanda would have been. Or I’ll say, I have a 21 year old and an eleven year old angel. People usually stop asking after that, they might say I’m sorry. It depends on how I read the room and how I’m feeling, if I want to get into it at all. But I never say I only have one child. I’m still her mom, she is just in another form now.