Trish and Jack

I always appreciate sitting down with Trish Dorr. She is one of the rare people I’ve met who doesn’t constantly second guess her way of grieving. She reminds me that it’s never helpful to make any assumptions about what grief looks like from the outside. Not every grieving parent cries all the time. Not every grieving parent benefits from the grief group model. Just because someone is cheerful and functional and articulate doesn’t mean they aren’t living with an unfathomable loss. Trish seems to trust herself and the mysterious process of grief. When I’m with her I marvel at how much space there is for everything: aliveness, sickness, death, vulnerability, strength, motion, stillness. Trish embodies the paradoxes of existence in a truly inspiring way.

Trish Dorr Feb2014_019What is the name of your child who died?

Jack

How did your child die and how old was he?

Jack was ten when he died. He was diagnosed with a brain tumor in his spinal chord.

Did anything help prepare you for this experience?

My divorce. Hugely. I think that it was the most wrenching thing on my heart because it was so unexpected. And I think unexpected, shocking things are hard for me. That had happened five years before, and I had a two year old and a three year old at the time, so I was suddenly single parenting these little kids, working full time and not wanting to be divorced. Like, I didn’t want to do this, and I was constantly fighting against what was happening, and not wanting it. And finally I had to go through all of these stages to get to the acceptance of, “This is just what it is. This is my life.” I also saw that I was depressed for so long and eventually, years later, I finally got out of it. Seeing that cycle, and getting to the other side of it made me realize I’ll get to the other side. If it had been an easier divorce, Jack’s situation would have been harder. But because it was so hard for so long, it made me stronger, and gave me perspective.

This is Jack in his last 6 weeks in bed, as his body was starting to paralyze. He spent a lot of time in that room, and that was the "visiting couch" where people would come visit with him, or he would sit and read or play games. I basically lived on that couch for a month and a half, soaking him in.
This is Jack in his last 6 weeks in bed, as his body was starting to paralyze. He spent a lot of time in that room, and that was the “visiting couch” where people would come visit with him, or he would sit and read or play games. I basically lived on that couch for a month and a half, soaking him in.

Also, just a year before Jack was diagnosed, my dad died, and his death was kind of abrupt. We thought he was just slowing down and getting older, and all of a sudden we found out he had stage four liver cancer. He died in five weeks. And it was right at the beginning of summer break for me, so it was perfect timing, almost like he planned it that way. Thanks Dad! So I was able to go home and be with my parents for five weeks, and be with him every day, and learn about hospice, and taking care of someone who’s dying. Seeing someone die for the first time, being there, seeing the process. I’ve never had the perspective that death is bad. I’ve never had that. I’ve always thought it’s natural, and we get a bit too worked up about it sometimes… It’s going to happen to all of us! I look at the natural world and see that death is a normal, natural thing. The animals aren’t fighting it, trees aren’t fighting it. A tree dies and it nurses other trees to grow. In natural populations, the young don’t always survive. I remember learning about the population growth curve and thinking, oh my god, we have so many people living. We shouldn’t have so many people; we’re not living sustainably. I remember reflecting that maybe natural disasters are nature’s way of keeping population growth in check. People would ask me, “Well, what if it was somebody you loved?” And I remember thinking, “Well, it would have to be okay. It’s the same for my people as anybody else.” It’s helped give me perspective, to think people die, that even the young die, sometimes. People have given me funny looks, but it helps me make sense of the order of things.

My dad’s dying gave me that personal experience of what it’s like to go through someone’s death. It gave me knowledge about dealing with doctors and caring for someone in an intense medical situation. Learning that what’s most important for someone who’s dying is that they’re comfortable and as happy as they can be. My dad taught me that the quality of life counts. He was ready to die once he had to be in bed all day. He didn’t believe it was a great quality of life, at that point.

I talked myself into some misinformation about Jack’s prognosis, like thinking I had ten years left. So in some ways I wish I’d known how fast it was going to go. I really thought I was going to see him as a teenager

What if anything might have helped prepare you better?

I talked myself into some misinformation about Jack’s prognosis, like thinking I had ten years left. So in some ways I wish I’d known how fast it was going to go. I really thought I was going to see him as a teenager. Doctors were vague, and there was nothing specific I could find in the research. What he had was rare, not the brain cancer itself but that it was in his spinal chord. There weren’t enough studies to know a realistic prognosis. But if I had known, I would have quit my job earlier and stayed home with him. I would have probably taken both my kids out of school that last year and gone and done stuff while he still could. I would have taken him on all the roller coasters he didn’t get to go on. But our doctor thought he might live at least another year longer than he did, and I figured I needed to keep working for financial reasons.

What has helped you in your grieving process?

IMG_0682I stay really, really busy. Whether I busy my mind with work things, or where to plan a vacation. Teaching keeps me focused on kids with immediate needs, so I’m not immediately thinking about Jack. I think I’ve avoided thinking, somewhat. Instead, I’m focusing all of my energy on my daughter (Alex). She’s been in my class for the last two years, so that’s been great. But just when I started to think I could relax into my grief a little, Alex got diagnosed with Type 1 Diabetes, and then I had that to focus on. It felt like, “Alright, I lost one, and I’m going to keep this one healthy!” I went into soldier mode, like, “Okay, here we go!”

Perspective helps. I mean, I think about friends who have children with mental illness, and in some ways that seems worse than what Jack had. I mean, we knew what we were dealing with and the likely trajectory, but with mental illness it’s so wide open. And with Jack, I did what I could do. I felt good about what I did to take care of him. So I try to remember those things and not wallow. But at other times I get so angry. And then I think it’s not fair to get angry about it. So I get all torn up inside.

What has not helped?

I think there were some mixed reactions that I wasn’t expecting when I returned to work. Being a teacher at the school that Jack attended, I was hopeful that it would be a place where I would feel supported and safe talking about Jack. While there was a lot of that, at the same time, I was told that some staff were uncomfortable hearing about it, and some kids were too sad to hear about it, so we needed to move on and be done with it. I didn’t know who felt that way, so whenever some staff did bring it up, it was uncomfortable for me thinking that others in the room really didn’t want to be hearing about it. I felt like I had to worry about their discomfort on top of my own grief. While some thought we should have a picture up and way for kids and staff to honor him or just sit quietly and remember him, others thought that it was just too sad, and that if I missed him I should keep a picture of him in my cupboard, and open it up when I was feeling sad so I could look at his picture, but not have a picture of him out. His whole class was still at the school, and I was there looking at them in the classroom around the corner, and they were looking at me…but we didn’t say much to each other that first year. For the most part, we found our way together with silent hugs in the hallways throughout the year.

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It’s also hard when people who are close to me move through these things so quickly. It feels pretty lonely. So I try not to bring it up that often. It makes people uncomfortable, and it’s hard to deal with your own grief and then have to manage their discomfort, as well.

I also think it’s important that people know that just about the worst thing is to pretend like nothing happened.

What do you wish people knew about grieving a child?

That it’s so diverse. That the number of tears shed doesn’t equal how much you feel. It comes up in different ways at different times. I think I’m a pretty high functioning person with whatever’s going on. I’m generally going to get done what needs to get done. At the same time, as soon as my body notes that there’s a crack in the schedule, my body takes me down, and I’m on the floor. And it’s really shocking when it comes up. It’s like this part of me is just waiting for me to have a moment, and it’s like, okay, now you’re going to feel this really, really intensely, and then it’s gone. But it doesn’t mean that it’s not on my mind the whole time. I think because I’m high functioning, people forget that I’ve lost a son. But I don’t.

I also think it’s important that people know that just about the worst thing is to pretend like nothing happened. Never mentioning Jack can be incredibly painful, and if I’m busy taking care of your feelings by not mentioning this sad topic, and you’re too uncomfortable to bring him up, then my beautiful, bright, incredibly brave boy doesn’t get remembered and honored out loud. He’s an amazing kid, and he definitely deserves to be remembered. He would want to be remembered.

Did you talk to Jack about dying?

IMG_0892There was one day we did. It was when we got the results of his last MRI and it was clear the tumor was growing and they were going to stop treatment. And so we brought him in, and told him what was going to happen, no MRI’s, no more treatment, that he would eventually become paralyzed. Later, we went back to his room and talked about it, and cried a little because it was scary. And that night, at dinner with a friend, we joked about it, a little. We were using the euphemism that he’d be paralyzed, which was easier for all of us to talk about, I think. At one point he said, “I’m so bummed that I’ll never get to drive, I’ll be paralyzed by then.” And I said something about kissing girls. He was very anti-girl then, but he said, well, maybe in ten years I’ll want to kiss them, but I’ll be paralyzed. And I said, well, maybe I can arrange your body in some fetching way, and some girl will want to kiss you. We laughed. I think it was a light way to talk about the subject, not too direct. But that night in bed, when it was just the two of us, he asked me, “How do people die from cancer?” I told him vaguely about different cancers and so on, and then I said more specifically, with a brain tumor like his, it would cut off his ability to breathe. He said, “Well, if that happens to me, I don’t want a breathing tube!” He’d had them after surgeries and really struggled with them. I said, ok. And he said, “No really!” He was adamant. So I said, “Okay, let’s email the doctors,” and we did that. And then I told him if he didn’t have a breathing tube, he’d die from not being able to breathe, and he said, “Okay…Well, if that happens, I want Alex to get all my stuff.” And that was it. That was all he wanted to talk about. I asked him sometimes if he wanted to talk about it, but he always said no. Even in the last weeks, he just said, nope, and we moved on.

How have you changed?

I don’t feel as quick to go to a joyful place as I used to. Also, being a family of two is completely different from being a family of three. There’s a lot more energy in a triad. With two, if you have nothing to offer the other person in a moment, that’s it. Alex doesn’t have a sibling to play with. It feels more stressful to me. So I feel like a less competent mom, because I don’t have the fun factor of a sibling to offer. We joke about getting a foster child or me having a baby. In some ways it’s more special, because the two of us have so much time together. And some of the things we do would have driven Jack crazy, like our loud singing!

I’m also a different teacher. I used to hear from kids that I was their favorite teacher. I was fun and patient. I have sharper edges now. That realization is kind of sad for me. I don’t want to take it out on the kids. But I think that’ll come back in time, the more joyful, fun teacher part of me.

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What do you want people to remember about your child?

Whatever they knew about him. Because I think people experienced him in so many different ways. He was very playful and intensely intellectual and intelligent. He was a mischievous little boy, I mean, he could irritate his sister with the best of them. I think I miss his playfulness the most. And his courage. He was incredibly brave to go through all of that stuff and keep his positive outlook. He did cry at times and ask why it was happening to him. Once he was crying and asked if I thought he was patient, because he was upset about something, and I said, “Oh my gosh, are you kidding me? You’re the most patient person I know!”

His room is exactly like it was. The pillow he was laying on, the blanket, the towel, I still have those. The first several weeks after he died I slept in his bed. And when I have a hard time, I find those things comforting.

Do you still feel connected to your child and if so, how?

IMG_7987I think the essence of him seeped into other things. There’s a little of him in us, and in me. I think his dog got part of him. For a long time there were great blue herons that would show up. Right before his memorial service, this great blue heron appeared up by the duck pond and was doing this crazy stuff, like wild feeding displays and swimming like a duck. I was told that great blue herons are a symbol of the passage out of life, and all that summer, we saw them everywhere, in the oddest places. They make me happy. I think, “Oh, there’s Jack! “

His room is exactly like it was. The pillow he was laying on, the blanket, the towel, I still have those. The first several weeks after he died I slept in his bed. And when I have a hard time, I find those things comforting. We have a small urn of his ashes and take him wherever we go. We have a lot of selfies of the three of us on the beach and other places. Alex and my mom and I have necklaces with his ashes in them. I wear one with his thumbprint. So he’s always with me. But he’s also never here.

What do you answer when people ask you how many children you have?

I do a quick assessment of the situation before I answer that. Like, is this a moment to mention that I have one that isn’t living any more? Is this a person who can hear this? Sometimes I just say I have two and give the age Jack would be now. It often depends on the situation and the kind of rapport I have with the person I’m talking to. It feels good to be able to talk about him. To remember that there’s that other part of me.

Trish teaches 5th grade at Helman Elementary and spends all of her time with her witty and beautiful 11-year old daughter, Alex.

6 comments: On Trish and Jack

  • Thank you, Trish and Lucinda. I always seem to tear up when I read these stories, and Jack’s is perhaps even more poignant to me, for whatever reason. I can’t really know why. I just let it wash over me and be what it is. Like you, Trish, I am okay with death in concept. But I can’t imagine how it would feel if I lost a child.

  • Thank you Trisha for sharing Jack with us!! I love your honesty and can feel your heart. I to lost a son and can relate….Lots of love to you!!

    Mary~

  • What a beautiful interview! Thank you Trish for being so open and honest. Jack sounds like such a fun, and special young man! I work for Courageous Parents Network and would love to share your interview with the families in our network. I hope that is okay. You have so much to offer them. Thank you again and all the best to you and Alex!
    Rebecca

  • What an incredibly moving account. Jack was obviously remarkably brave . Thank you Trish for sharing this.

  • Thank you so much for sharing all of this. My almost 11 month old granddaughter, Blake, died on August 10th. She had a disease called Spinal Muscular Atrophy- SMA- type 1. I don’t have words yet. I am broken at the moment; grieving the loss of my beautiful grandchild, as well as watching my daughter go through this most horrific experience. Your story helps me to know life will continue to move forward, even if it feels like we can’t sometimes. I truly appreciate reading about your strength and courage throughout Jack’s life and death. I will hold you in my heart, along with all of us who have experienced such a tremendous loss.
    You’re an amazing mom!

  • I remember his sweetness, his courage, his amazing wit-and deep love for his mom and sister. And that when I talked to Trish-he got a little extra screen time 💙🌻💙

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