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.