When Your Child is Diagnosed

Hello my dears,

Today, I want to introduce you to someone very special to me—my mom! Since we’re in the Mother’s Day spirit around here, I thought it would only be right to invite my mom to answer one of the questions I get all the time.

Without further ado, meet Karen! She has a Ph.D. in music but she never sings over other people’s terrible voices in church. I know. She’s a saint. She’s my favorite mom which is so convenient because she is mine.

***

What was it like for your parents?

That’s the question Kate has been asked so many times–about what it’s like to be a parent of a child that is seriously ill. So naturally, she asked her Mom. That’s me.

Whew, so here we go.

There it is again, the awkward moment in the grocery store. An old friend appears and our eyes meet. We haven’t seen each other since Kate’s cancer diagnosis, so she hesitates. But rather than walk away, she approaches in a brave attempt to be supportive. And then here it comes again, that phrase: “I can’t even imagine what you’re going through!” It is meant to express empathy, and to acknowledge the enormity of what has happened, and yet strangely it also highlights the divide between us. One of us is in the world of ‘normal’ with everyday problems to solve, and the other is in a world stretched out beyond recognition.

The underlying problem with this terrible other world is that it is all wrong. Children are not supposed to sicken or die before their parents. In this wrong world, the horizon shuts down, and time is marked not by hours or days or weeks, but by scan to scan.

Upon hearing the news of the ugly diagnosis, I felt strangely uncoordinated in my thinking. When emotions did surface, I felt anger, disgust, and the absolute certainty that this was an outrage. In private, tears drowned everything but helplessness and despair. But if there was something I could do….now there was something to hang onto. Make bone broth. Buy organic soap, or cotton clothing. Take Zach out somewhere. And most of all, do your darndest to keep things as normal as possible. Hide your pain. You can at least shield her from that. My rule was, “Don’t cost her anything.” But this can be an isolating rule as well, a peculiar kind of loneliness. The grief of lost intimacy.

So her Dad and I learned to ask people for things. We heard of a Romanian orthodox service especially for the healing of cancer, and there we received prayer, an icon and a loaf of bread. My own prayers expanded beyond my Protestant traditions to include new ones like the Jesus Prayer, the Catholic Novena, and Mother Theresa’s favorite, the Memorare – nine times in petition and one in thanksgiving. The repetition was an excellent container for my pleas. But sometimes we had to learn to ask people not to do things, like talking about the illness when it was overwhelming. Life becomes a negotiation, as in ‘can I afford this conversation?’ Some days I had trouble getting moving, or leaving the house even when I had to be somewhere. Brain, where are you when I need you?

In the crisis moments, it’s “All hands on deck!” so everybody is conscripted –colleagues, friends, entire churches, and any random stranger along the way who would listen to the urgent message: “My daughter has stage four cancer.” I still remember the man at the local post office who promised in his sweet Tar Heel accent that he and his church would be praying. And I knew he meant it. In all this there comes a heightened sense of gratitude for the faithfulness and many kindnesses of others, and also a deeper tenderness toward anyone suffering.

Suffering is a lonely place, because no one else sees with your eyes. There is a void inside you, whose shape only you can define. But when there is a witness to that suffering, someone who sees you in it—will be with you in it—you are not alone anymore with that choking vulnerability, and it is bearable. That’s what compassion is, literally: com-passion, with-suffering.

“Love for our neighbor, being made of creative attention, is analogous to genius…. In this moment of attention,” says Simone Weil, “faith is present as much as love.” (Love in the Void, p. 28) For it is a creative act that is an echo of the divine—Immanuel, God with us.

“Rejoice with those who rejoice, weep with those who weep.” –Romans 12:15

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29 Comments

  1. Oh my, Kate. Hearing from your mom means so much to me and her words are so honest, so clear, so very very helpful. Hearing her voice makes me ache in empathy as I too am a suffering mom. Thank you~with all of my heart~for sharing her with us. She is lovely in every sense of the word and I wish I could live close enough to become her friend. I’m guessing we are about the same age as you are the age if my daughter. Please thank her for doing this. 😘

  2. Oh my, Kate. Hearing from your mom means so much to me and her words are so honest, so clear, so very very helpful. Hearing her voice makes me ache in empathy as I too am a suffering mom. Thank you~with all of my heart~for sharing her with us. She is lovely in every sense of the word and I wish I could live close enough to become her friend. I’m guessing we are about the same age as you are the age if my daughter. Please thank her for doing this.

  3. Dear Kate,
    Thank you for asking your mother to share her thoughts about being the parent of an adult child diagnosed with cancer. Two years ago, my beautiful daughter was diagnosed at age 31 with a particularly aggressive form of breast cancer. We never saw it coming – no history of cancer in the family and certainly not breast cancer. In those first months after diagnosis, the news was always bad. I could see the concern in the oncologist eyes when she didn’t respond to certain treatments or was exposed to the very harsh side effects. She embarked upon 18 months of very aggressive treatment. The invasion of cancer permeated all our lives. While intellectually I knew first and foremost this was her journey and her husband’s, and we would be her support team and, every ounce of my soul as a mother screamed and raged at the universe, behind closed doors. There was nothing I could take to assauge the pain. There was no relief because there were no answers yet. We respected their choices, we dropped everything to help. But there are moments forever frozen in my mind that I could only describe as a knife to the heart, as in the the moment when I saw her seated for the first time in the chemotherapy chair. When her hair fell out. When we began discussing surgical options. When they told us that the most critical drug life saving drug for her particular form of breast cancer had damaged her heart and that the drug had to be suspended for a period of time. (but her heart did recover and she could have it again). My heart was broken, but I could not let her see that. I wanted to tell the nurse – don’t give that chemo to her, give it to me. And then came the personal isolation, the fear that accompanies the wait for test results, the surprising twists and turns of the treatment process as the magnificent doctors of Dana Farber painstakingly managed her care and safety through the toxicity of the drug protocols. I felt I lived in parallel universes – every day was “out of body.” The concerns of the everyday world felt absurd. I too had to think about what conversations I could tolerate. It was painful to run into the mothers of her friends – they were on to conversations about grandchildren. People had the kindest of intentions, but only a handful really knew that “less was more” in offering support. There were those who also wanted to minimize the situation; they were quite simply afraid to look at what we were going through. I learned to keep my own counsel, and am forever grateful to a small group of friends who were willing to just listen when I poured out my own pain to them in order to keep it from her and the rest of our family. My daughter, son-in-law and husband and I had always been close – supporting her through the harsh side effects of the cancer treatments brought us even closer as a team. For that I am most grateful. I kept a journal to unload my raw grief every morning into a compartment in my head in order to get on with the day. I felt like a caged lioness who could not get to her cub who was outside in grave danger. Throughout this, my daughter was remarkable in her outlook, steadfast. I knew my role was to reinforce that for her and my son-in-law. She completed treatment last August and is now on a preventative regimen. Her grace throughout this and her humor are simply extraordinary. We are grateful for her extraordinary medical team. We move on and forward with her and follow her lead. But that being said, “how are you? and how is your daughter” were loaded questions for a long time, and I can relate to your mother’s internal question “can I afford this conversation.” I had to become highly selective on what I could and could not say to the world. In time, as with all things, we learned to accommodate and adjust to the cancer world. That being said, I feel the resources for parents of adult children with cancer are limited and I hope in time there will be a greater recognition and resources created.

  4. Kate mentioned in a podcast that she admired the way you pray (Kate’s mom). And that your prayers taught her so much. I’d love to hear more about prayer in times of suffering. As the person who is ill, also stage IV, I have relied so much on the prayers of others. I often am too distraught, overwhelmed to know how to pray any more…

  5. I am with you and Kate, in thought and prayer. You are not alone, and many are supporting you in love and prayer. I was a nurse for many years and the empathy and compassion that is integral, still consumes me, please know I have witnessed miracles. I am also a mother, and I too love my children immensely as you do. I realize there are days when the grief is inconsolable and incapacitating, please know there are people that care. Sending love and support….

  6. Thank you for your words, especially the lost intimacy part, I struggle to put the words to what I am feeling and that worded it perfectly. Prayers for your family and you.

  7. Thank you for your words, especially the lost intimacy part, I struggle to put the words to what I am feeling and that worded it perfectly. Prayers for your family and you.

  8. Now I know part of where Kate gets it from — her mom is awesome. Thanks for sharing her with us.

  9. Thank you for sharing your mother’s words. That was very moving, and brought me to tears. She has so much grace and wisdom.

  10. Thank you for sharing your mother’s words. That was very moving, and brought me to tears. She has so much grace and wisdom.

  11. In 1969, my mom at 37 was terminally ill with stomach cancer and died within 8 months of her diagnosis. I was the oldest child at 20 and was the main caregiver with limited services for cancer patients at that time, she was sent home. When I was asked how is your mom? I wanted to scream “what do you think!! She is dying”—but I knew they meant well and really didn’t understand my internal emotional chaos. I would say thanks for asking—she is having a good day. I learned so much about life from this experience and now, I am having the opportunity to learn more as the cancer patient since 2013. Thank you so much for sharing. I love Kate and her wonderful sharing and continue to pray for her healing.

  12. So it’s hard to find the right place between “I can’t imagine what you’re going through” (no you can’t and thanks for pointing out the distance between us) and “I know just how you feel” (no, you can’t because you are not me.)
    Also: This mom remembers being told (in her daughter’s presence) “Mrs. T — , you are doing your daughter a disservice by holding out hope for her.” And this mom remembers storming out the door with a “Never tell a mother not to have hope for her child!”

  13. Dear Kate, Your Mom is so lovely and so wise. he is a blessing to you in every way. Thank you for your post. Without ever being in your situation but being a Mom, I know how we bleed for our kids when there is trouble of any kind. God bless you and your family.

  14. Hi Cindy,
    Thanks for writing. At times when I am overwhelmed and it is so hard to pray, I’ve relied on repetition to help me hang on. Hope of some kind returns, and a measure of peace. It isn’t so important what the words are, because we know that the Holy Spirit prays for us (and in us) with groans too deep for words (Romans 8:26-27). You could pray the Lord’s prayer, or any beloved Psalm, for example 121 “I will lift up mine eyes..” You could also take some beads and make them into your own version of a “Rosary”. You could pray for yourself on one bead, and then for each of the people in your life on the others, adding scripture along the way one verse at a time. And there’s always the simple cry “Help me Jesus! Have mercy!” Prayer rising…

  15. Thank you for sharing. I’ve survived two different cancers so I know people can say crazy things. I learned to appreciate not the words but the spirit of the words. Knowing that people loved me gave me strength and also peace. We can definitely see God in others around us. Thank your Mom for sharing.

  16. Please post the prayer you read about grief on your 5-12 podcast. Thank you for putting so many of my feelings into words and providing such clarity, support, and love. I appreciate everything you share via podcast or blog. You are incredible, & a constant inspiration!

  17. Dear Kate,
    Thank you for sharing your mom’s feelings. It is very inspiring and grounding. Sometimes pain and grief leaves you uprooted from even yourself.
    I read your book and listen to your podcasts for inspiration and comfort.
    You are an amazing force, a light.

  18. Thank you. My husband is in a stage 4 cancer trial. His original diagnosis was in 2011. My daughter was in kindergarten then, and now she’s about to graduate from middle school. It’s been a long and exhausting road. Hearing from you, and now from your mom, makes us feel less alone.

  19. Thank you for sharing your part of the journey Karen. I’m certain you have brought strength and grace to your family.
    Grace and peace to you all.

  20. This was so meaningful for me to read. Our only son died last July 29th. He had Kidney Disease and then Heart Disease became a major issue. He lost his transplanted kidney after a massive heart attack He never whined or complained that this was not fair, altho, I must say, as a mother I did. We had known for the last 35 years of his life that there was really no cure and that he would not live to a ripe old age, but we prayed that we would die before he did. God had different plans for him. He was a Nephrologist for Children and worked in a large children’s hospital doing his very best to teach by example and by his excellent teaching abilities, his compassion, and his knowledge. His father and I did not know just how much good he did and how recognized internationally he had become until after his death. Even had that not happened we would have been proud of him because he was a delightful youngster. I could not wish him back to all the pain and suffering he went through in his too short life, but we miss him so much. Thank you for s
    haring your insight with me. Shiela

  21. I too have an adult daughter with a chronic illness. I too find is alienating when people respond with “I cannot imagine what you are going through”. Or even worse, when the conversation regarding death of a child arises, they respond with “Oh, death of a child is just the worst!” Says who? When did we start rating the pain of bereavement? For those of us who have to face this possibility, it is not helpful to create angst and fear making the loss of a child seem like some rare insurmountable tragedy. Children must bury parents and yes, parents must bury children. I prefer to reframe people’s fear of difficult pain by telling myself that others have survived and even thrived after the death of a child. If and when I am faced with this pain, I will follow their path. I have a mother and a brother who both buried children. Although they do refer to this experience as painful, they live fulfilling and joyful lives. I firmly believe we were created with the appropriate physical, mental and spiritual constitution to integrate the spectrum of human experience. All loss is painful. And humans have the capacity to heal from all loss.
    So, when I come across the catastrophic folk who “cannot imagine” or tell me what lays ahead for me “is the worst”, I run in the opposite direction. I seek out the company of those who can imagine and live joyful lives despite loss.

  22. My question is how can I be positive and have faith when my daughter is sobbing that she might not get to see her 7 year old daughter grow up?

  23. Oh Cindy, I am so sorry. I don’t think we are meant to stay positive or face such terrible things without flinching. The pain is real, you have every right to feel overwhelmed. I often pray for God to help me to see things clearly and to fulfill His promise that He is present during the worst moments of our lives. So, dear one, may you feel God’s presence and know that you are held in His love.

  24. In 2020, when my son was diagnosed with Stage 4 colorectal cancer I emailed Kate Bowler at Everything Happens podcast. Brian was 49, married to Anna for 25 years, full of life and just fulfilling his dream of owning his own business. I’d been listening to Kate since the podcast began, and from the first felt intimately involved in her journey, as I suppose most of her listeners do. I wanted her to know- or more precisely, I wanted everyone to know and to pray for Brian and Anna… and me. Harriet Putman replied very quickly to say Kate’s staff would pray at their weekly meetings, and we exchanged emails for the first several months of Brian’s treatment at Duke Hospital. Harriet’s kindness in continuing to let me know Brian was in their weekly prayers were part of the large community of friends which “settled” me in my feelings of helplessness. Brian’s scans were clean for a while, but he is now having chemo again, and the “not-knowing” is back again in the back of my mind. In 2021 Brian was interviewed on The Summit Podcast (from the Heroes Foundation), and said “if I were to die right now I’d have no regrets”. As his mother who certainly would have regrets if he dies before I do, I know he means it. I’ve watched him since his birth, it seems, set goals and surpass them. He has “lived life large”, and his tagline with me is, “Mom, it’s all good.” Karen’s words “Suffering is a lonely place” are the starting point, and her reminder of the compassion witnesses to our suffering bring us is precisely what I find not only in the podcasts, but also knowing the immediate comfort of being prayed for- and Brian being prayed for- by the Everything Happens staff. It’s all good, isn’t it- even when it isn’t?

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