Holiday Grief Etiquette: A Beginner’s Guide

I am calm. I am calm. It is the calm before something awful:

The yellow minute before the wind walks, when the leaves

Turn up their hands, their pallors. It is so quiet here.

The sheets, the faces, are white and stopped, like clocks.

Voices stand back and flatten.

-Sylvia Plath, from “Three Women: A Poem for Three Voices”

We’ve entered the final weeks of 2011. I want to say “this has been the worst year of my life,” which is true, but 2012 isn’t promising any champagne toasts. That’s the way it is. My yoga teacher said in class last week that the true nature of love is to love your life exactly as it is, all of it, right now. It might be the most difficult task I’ve ever attempted, but in a deep sense, as stricken as I often feel, I do love my life, and of course I love my son. He’s made my world big and beautiful and messy and mine. I just wish he could continue being a part of it because Ronan could die this year; that possibility is very real. At night I have dreams of being on my knees in the rain in a graveyard, trying to push aside the leaves from the death date on Ronan’s tombstone. The date is already engraved, decided, determined, decreed; I can slot the tips of my fingers into the depressions in the stone like tracing Braille, but I can’t read with my hands and I cannot see. I am not hysterical but robotically calm, hands careful, feeling for the date again again again. March 24, 2010 — When? But the rain is too thick, the leaves are too heavy, and I wake up not knowing a thing except that I am sad, and the only option is to turn around on the road I’m on and face it, the loss. What I’d like to do is claw the eyes out of grief, shake it, make it tell me something comforting, but all it says is: “I’m telling you the truth. Deal.”

For grieving parents or parents of terminally ill children, holidays are like milestones of time: will my child be alive next year? Remember how it felt when I didn’t know he or she was going to die? All the red and green holiday glitter, the television advertisements of families waking up happily in their clean homes to unwrap their perfect presents: no kids with disabilities, no dying parents, no depressed teenagers. That demographic is saved for the ads for lawyers (Are you disabled and no longer able to work? Let us help you!), AARP supplemental insurance ads (When Medicare is not enough!), and pharmaceutical promos (Are you on an anti-depressant and still feeling depressed? Talk to your doctor about Boost-Your-Mood). So, no, those of us who are grieving are not in the “holiday spirit,” but I’m not even sure what that means. Why do the lines on what is promoted as a “good life” get drawn even tighter during the “season of giving?” Why do people insist on feeling good about themselves after donating toys to a drive or serving their one meal a year at a homeless shelter? Who is the giving really for? It seems I’m on the phone more and more during the holiday season with friends who are dreading the trip home to family dysfunction and/or disapproval, friends who have lost someone dear to them and this is their first holiday alone with that grief (for grief makes all of us singular in that way), friends with kids in the hospital, or friends calling in tears because their lives don’t look like a holiday ad, and then feeling guilty for feeling badly because does anyone’s life really look like a holiday ad? Would you want it to? Turns out that the most wonderful time of the year is a disorienting period.

And it has been a disorienting few months as Ronan’s mom. Around Thanksgiving Ronan began to struggle a bit with swallowing, and his seizure activity has increased since then. These setbacks don’t seem to make him uncomfortable, but they can be upsetting to others when they happen in public. I often have the impulse to shield him with my body when he starts to choke-cough or shake his hands a bit. There are some things only a parent is allowed to witness. But he’s still giggling and smiling with his little crooked teeth as I sit and make edits to my book, the pages spread before me like great square leaves.

From the outside, it can be difficult for people to know what to say to parents of dying kids around the holidays. I understand this, so I’ve compiled a brief list of what not to say, culled from some of the wisdom and advice I have been offered over the last month. I think of it is a kind of Santa “wish list” for my interactions in the world.

1. “I can’t imagine how awful you must feel.” Actually, the horror of death is that all of us CAN imagine it, and being reminded of how awful I feel sometimes makes me feel more awful, because in that moment I might actually be feeling the blazing and brutal unadulterated happiness that goes hand in hand with loss.

2. “You must feel so hopeless.” I think it’s kind of obvious that none of us experiencing grief needs a reminder of the hopelessness of a terminal diagnosis.

3. “You’re so brave. I couldn’t do what you’re doing.” What, in this case, would a lack of bravery look like? I shudder to think. Isn’t everyone relatively brave to get up each morning in this weird and wonderful and terrible world? You would just kick your kid under the bus if he or she had a problem? Really? Isn’t bravery part of what it means to be a human? Isn’t that what’s required to have any kind of open heart at all?

Nobody knows what to say, but maybe we can learn.

This is Ronan’s second Christmas, and it might be his last (I threw out all those “My First Christmas” onesies, and I was tempted to burn them). Or it might not. And there’s this: it might be my last Christmas, and it might be yours. Don’t think you are immune to turning around on that path yourself and seeing something you don’t like: loss of love, life, ability, wealth, friends, family, anything. And if you do experience a loss that you live through, I hope you’ll find me so that I can say to you what it DOES help to say to a grieving parent (or at least this parent) during the holiday season, or any season at all:

1. How are you today?

2. I want to be helpful. Tell me what to do.

3. I’m thinking of you.

32 responses to “Holiday Grief Etiquette: A Beginner’s Guide

  1. Big hugs that I’ll deliver in person in the next week.

  2. It is December 10, 2011. Lauren set off the fire alarm in the Benton Cafe around noon, then wept for half an hour. She now knows about fire alarms. We’ll wait for her to learn about the alarms that don’t turn off ever. Need I say, “Thinking of you?” Love you.

  3. I think of you daily and pray for you often. My daughter was diagnosed with Lyme disease at 15 months…roughly three months after I left my abusive husband. I was still heavily affected by his behaviours, as I had been a stay-at-home-mom and lived far from any family support. I experienced a level of grief, fear and despair like non I would have dreamed existed if destruction hadn’t come crashing into my life and ripped my daughter from her babyhood into a maze of doctors, lawyers, specialists and pain. I realized, when my daughter was very sick and I didn’t know what the outcome would be, that there is a level of pain that you can only know in loving and knowing yu may be losing a child. It’s a grief that it overwhelming and, I found, alienating to others who can not possibly know the depth. My daughter has been well for almost a year now, and I try to live without fear that she may become sick again. As you said, none of us know our end, but don’t judge yourself too harshly if those words don’t mean much right now. I hope your blog is helping you cope. I know there have been times it’s helped me and many others. Love your son with everything you have left. That is all you have control of and all he needs from you at this moment.

  4. Thank you Emily for your frank and honest writting. I appreciate learning so much from you and your life. My family and I will be “thinking of you” too.

  5. I have been thinking of Ronan today. I want you to know that I’m thinking of you, and you are not alone.

    So…how are you, I want to help, but feel helpless. I feel like hopping in my car to see Ronan, knowing that he will forever be a part of my life and I will never have the chance to meet him. And I think of you and Rick and Ronan often.

  6. I was at one of those silly girly jewelry parties the other night. There was a 6 month old baby there. “What’s his name?” someone asked. “Roman,” his mom said.
    “Roman or Ronan?” someone else asked.
    “Roman,” she confirmed, an emphasis on the “m.”
    The girl who asked leaned into her friend, “Too bad. I always loved the name Ronan,” she said in a hushed voice. “It’s beautiful.”
    I thought of you then.
    “I agree,” I said. “I’ve heard it means ‘little seal.'”

  7. I think of you and Ronan at some point nearly every day. I say a prayer for you then, and wonder how you are. I have a feeling there are a lot of us out here who think often of your family!

  8. I too Emily, think of you and Ronan every day….. I send you many many warm hugs…

  9. I received my “What are you manifesting?” tee-shirt in the mail today, and have been thinking a lot about you guys. Thank you for helping me grieve and understand grief so much better this year. Your wisdom and words here mean so, so much. There is no “most wonderful time of the year”; all we have are frail moments, the ones we count, the ones we really notice and appreciate, in all their beauty and squalor and real-ness. I am grateful to be in a world where I can witness what you are doing and giving to your Ronan, and to our world.

  10. Thank you, again, for your honest. I pray for you, Ronan, and Rick on a daily basis.

  11. Sending hugs. Yes, when one is faced with the unthinkable, we are not brave, we just do what we have to do.

    I also think of you every day. And I think about the insights you have brought to my life. I lost a child and know that grief. We knew for just a couple of months that our son might not make it. We lived and we were happy (and scared) and we grieved. I think of you in that place right now but for much longer and with less certainty about when you will lose your beautiful Ronan. And with the sadness of seeing him get sick. I send hugs and some understanding.

    I am learning a lot about love and parenting and living from reading your writing. Thank you — huge insights, huge thoughts. I love the idea of stripping parenting right back and just focusing on love and being present right now (and not the future part). I think about that many times a day, and send love and good thoughts to you and beautiful Ronan and Rick at those times, too.

  12. Oh Emily, I related to this post so much. Grief doesn’t sell well, does it? It’s hard to wrap and even with the best marketers and advertisers in the world pushing “solutions” it sits there every day, refusing to be dressed up. The great machine of capitalism cannot convince us that if we buy nothing bad will happen to us when it ALREADY has. Grief shows us the man behind the curtain, the shallowness of consumption and the “ideal” holiday.

    I am an email or phone call away if you need anything at all. I wish every day there was something I could do to help. ❤

  13. Emily. . .I’m sorry that so many people end up on journeys that are such as yours. I was a child language therapist for years and watched the struggles of parents of chronically affected children trying everything and anything, often to the detriment of themselves, their child and their other children in the quest to help the one. Acceptance was often not a part of the bumpy, scary road trip. I hope that more people read your post — the conflicting emotions, the acceptance in the struggle to do the right thing for Ronan and the enduring love you share. Your story only helps those of use to appreciate every waking moment — and in our dreams as well — what we have when we have our health and that of our children. I think of you all everyday

  14. For me the “holiday spirit” is that time of year when everyone *should* slow down and know the right thing to say to everyone. That we should remember one of the few human beings that walked this earth and knew how “love [your] life exactly as it is, all of it, right now,” and do what he did – or at least try. Try to love our lives, or at the very least reflect, truly and honestly. People don’t like to be reminded to really think and meditate on their lives – or others’ lives, hence dreading visiting in-laws or any other various scenario you mentioned. I remember once I said “I couldn’t do it” to another mother about some trying parenting thing we were talking about, and she set me straight – and I’m so glad she did – similarly to the way you did here. I won’t belittle your situation by saying “I understand” because I don’t. But I will be reflecting on my life and your life and many other lives – I am thinking of you, and if there is anything I could do to help, I would.

  15. This is so beautifully rendered, and reminds me of all the ways that we fail to convey what we want, and of the terrible pain that we can cause when that happens. Thank you for renewing my commitment to really finding the right words, for reminding us all of the incredible importance of compassion.

  16. dear emily,
    for one reason or another i think of you and ronan every single day. sometimes it is because i see his little face on your blog or mine. at others it is because i am reading your lovely bittersweet words. most of the time it is because i wish there was something that i could do for you, for ronan, want to be helpful to you. in my dreams i am holding you both in my arms.
    much love, christy

  17. I love those recommendations of what people can say – spot on.

  18. Pingback: 4 poos & Guinness & Simplicity » Our Little Baby Blog

  19. Thank you. I have a 10 year old son, Benjamin, with Canavan Disease. All that you have written is absolutely true. Some people will never understand or know how to express their understanding. It is very isolating at times. I have had dreams in which I have lost Benjamin and I am searching, panicked to find him or I see him in my dream and cannot get to him. All the way, the mind processes the difficult things, I suppose.

    Wishing you and your family lots of holiday snuggles and kisses. Our favorite thing to do with Benjamin.

  20. Almost everything you write rings so true with me. My daughter has cystic fibrosis, and for the most part does really well and, for the most part, so do I. Or at least I think I do, and then something will happen. It can be something as small as a random cough, or a developing wheeze and I feel the sky crashing around me and I realize I’m not fine, I’m right on the edge, always right on the edge when I thought I was a mile away from it. It’s a panicky feeling. And nobody can make it any better. I get a lot of the “I can’t imagine what it’s like,” and “you’re so brave” comments too. They don’t help. If anything they make me feel a little alienated from the people who say them because these comments separate you from them, they might as well say “I’m so glad I’m not in your shoes!” I get a lot of compassion, but true understanding is hard to come by. Anyway, thanks for writing and sharing. I wish you peace!

  21. I dont know you but I think you are an incredible person as is your son. Your words are pure and true and I thank you for sharing your wisdom with us all and to show us what it really is to be human. My lovely cousin Jess posted this on facebook she too has a very very sick child. I think these children bring the best out in their parents more than anything else ever would have. Enjoy the milestones they are super special and” thinking of you”- embracing these times with great joy for a life shared and loved.

    Lizzie xxx

  22. Hi there,
    Hoping your day was bright… I have a 17y/o but many of my friends have babies and the love and emotion we feel towards our babies, well is it unmeasurable, joyous and at times quite painful.
    I think of you and your family often and pray for peace in our hearts and souls , so that we may enjoy each day we have together…
    Peace and Love,

  23. i will keep you and roan in my prayers. my good friend lost a child to he same disease and my son has a brain stem tumor. i appreciate your writing so much!

  24. I am thinking of you….right now….at this moment…and wish you a Very Merry Holiday Season.

  25. Maria Eliza Flores

    It’s a while since I read your Dragon Mon article and felt deeply touched by your family’s story. I’m very far away, in Brazil/São Paulo, but there’s not a day that goes by that I don’t think of you and your son. I really wish I could do more than just words and thoughts. Wish you courage, love and peace of mind. My heart is with you and Ronan. Eliza

  26. Thank you for your honesty and your willingness to share this private journey with so many strangers. My son was eleven when he received a head injury that resulted in daily uncontrollable migraine pain. That was six years and 4,000 doctors and 5 states ago. He is home now and making progress. But, the emotions you describe, the deep, daily darkness and love that engulfed me as I so desperately tried to capture for him a normal, pain-free life -are so eloquently detailed in your writing. I have learned to live at the intersection of great joy (he’s alive, he’s with me) and great sorrow (what he is still coping with, what he’s lost) and to move slowly through my moments as I can. There was not one thing anyone could say to me that would have eased the daily grief, the daily suffering, the daily loss of hope and innocence. I send to you all my feeble gratitude and sorrow and care for your mother’s journey through the inferno. I love the picture of Ronan with the stuffed turkey -it looks like his tiny soul is chuckling.

  27. Emily,
    Thanks for such a heartfelt post. I read your “Dragon Mom” article and instantly felt a connection as we are dealing with a terminal diagnosis as well. Our adopted son is older – 33 – developmentally delayed, autistic, and has been diagnosed with Huntington’s Disease.

    Your words in this post are spot on. Thank you for articulating these feelings so well.

  28. Your writing is helpful and it is true that there are so many unkind kind expressions from people trying to reach out to those who are grieving or who are anticipating a loss. Sometimes even in our grief we need to be tolerant. I know, it is hard, because tolerance seems as thin as oxygen at ten thousand feet. Yet you may need the person with foot in mouth tomorrow more than the most eloquent expression of caring.

  29. I am really sorry. Thank you for posting this blog. My love to you and your family.

  30. Emily, I have thought often of your family since first reading your piece in the NY Times. Ronan’s sweet face was especially on my mind today. I have to thank you for harnessing these wild emotions with your words and sharing them so honestly. With each word, Ronan’s life vibrates out into the world in such a large way. I know that, as one of those strangers who would do anything (and as a new parent), my life has been changed by Ronan’s presence here in the world, and your writing about it. Much love to you and your family and I will be thinking of your little seal often.

  31. Everyone has a reason and a right to be here, but we don’t need to know everything either… Ronan is on a road less travelled, but it is by no means a lonely road. We may each be on separate journeys, but that doesn’t mean we’ll go separate ways.
    Love and light are with you,

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