Family Notes: The “New” Normal

Family Notes: The “New” Normal

I also clung to the idea that if things remained exactly the way they were, if we were careful not to take a step in any direction from the place where we were now, we would somehow get back to the way it was before she died. I knew that this was not a rational belief, but the alternative – that when people die they are really gone and I would never see her again – was more than I could manage then or for a long time afterward. –William Maxwell, So Long, See You Tomorrow

At 2:00 this Wednesday, as she does each week at the same time, Ronan’s physical therapist came to our house. These were her observations of the hour: Roan seemed to enjoy our session. We played in the beanbag and turned on the vibrating seat. I played with different things to prop his hands where they would stay on toys or stay together so he gets feedback about where his body is in space (hand to knee, hand to mouth, hands to feet). I also worked on some tension on the left side of his neck.

Using her nickname for him – Roan – she wrote on a yellow slip of paper under the typed heading “Family Notes.” The font is playful and festive, and reminds me of an advertisement for the preschool near my house: Small World Nursery School, Enrolling Now! We keep these single sheets of notes in a folder, although sometimes I wonder why. Wouldn’t it be better to just pretend that time could stop as Maxwell’s narrator longs for it to do in So Long, See You Tomorrow? Couldn’t we just freeze this frame and not go forward (which for us means backward), and just leave the foot hovering in the air, let the ground spin away, just suspend deliciously forever? “Stop time in its tracks!” bellows one spam email in my inbox (an advertisement for wrinkle cream.) “Expect musical skills soon!” promises another from the child development website that I’ve unsubscribed to almost 100 times but without results. Couldn’t this Wednesday be our last page of family notes? Couldn’t we stop here, stop adding to the stack? Couldn’t it be that easy? Someday, of course, the narratives will stop because Ronan’s life will stop. I know this, I expect this, and I know that when that happens I will wish for the reverse; I will wish for more family notes, a thicker folder, more time. I will want the house covered in yellow sheets of paper, little scenes from Ronan’s life, just another day, just one more skinny piece of paper to shimmy into the short stack. I’ll be a hoarder of narrative.

Expectations feels as meaningless as words these days; all the little narratives that pepper our world but without adding the flavor of meaning, without adding anything at all. Walking through the grocery store I read “Meet our beans!” on the back of a soy milk carton; a chocolate wrapper practically promises that the bar inside the gold-flecked wrapper is health food; one cereal box claims to contain cereal grains “on a mission;” wine bottles, even the cheap ones with clip-art labels, have tiny stories about how the grapes were harvested. At the coffee bar is the eco-friendly directive to “re-use your coffee mugs.” Words: so often undeserving of the emotional weight they want to carry. At the check out counter, among magazine headlines that promise to “build a better butt,” and “avoid holiday weight gain with just three tricks” and the latest celebrity baby photo or pregnancy announcement or fashion flub, is a magazine advertising, simply, “health,” that looks the least odious and that I attempt to page through while waiting to check out. A life coach offers the following advice to a woman who writes in to the monthly column, worried about being “fired up” all the time, constantly in fight or flight mode. Stating the very obvious that “being in stress mode impairs your judgment during everyday situations, because it narrows your perspective,” this coach of life recommends that this frazzled letter writer schedule in daily fun and exercise, claiming that the implementation of such tactics will create a “new normal” that will feel so totally amazing. I numbly replace the magazine in the rack and remember that our new normal is so out of most people’s vision or understanding that there is no magazine article to help make sense of our dangerously narrow perspective, like a snaky hiking trail etched into a Swiss mountain and without a guardrail. There is no parenting advice, no call-in radio show that might help us navigate these weekly family notes and what they mean, which is that our child is dying and there’s nothing nothing nothing to do about it. There are no real strategies here, because the part of the body that must adjust to the new normal is the heart, which is a muscle, and therefore stubborn and strong and braced both to avoid and absorb loss. The heart, the heart – what to do with it?

That same morning, during my office hours at the university where I teach, I opened my Emily Dickinson book – the old school hardcover version with the glossy white cover and the silly pink flower bouquet that I remember cracking open on finally-cool summer nights after my grueling double shift at the mall, the first at Victoria’s Secret, where I chirped and flirted merrily away selling bras and matching panties, and the second at Eddie Bauer, where I changed out of my skirt and hose into a flannel shirt and ripped jeans to stock the shelves, when I would recite some of Dickinson’s poems to keep from going completely out of my mind – and found a to-do list written on a notecard in handwriting that was not mine but that was easily recognized as female, with curling, looping letters and one heart-dotted “i.”

Cheetos

Bagels

Butter

Milk

Mac n cheese

Hot pockets

Something frozen and sweet

Lettuce (checked)

Dressing

Carrots (checked)

Bacon bits

Cheese

Lunch meat (checked)

Bread

And there I was, for just a moment, in somebody else’s life, inside somebody else’s normal errand, wandering through the cool aisles of the Whole Foods in Santa Fe, New Mexico with my shopping list, not wondering, for just a moment, how many more moments I have with my son, but wondering instead what sweet and frozen treat I might buy (Coconut milk ice cream? Sara Lee cream puffs?), and wondering about the maker of this list. Was she a mother, a graduate student, a grandma living on social security? Someone I worked with at Eddie Bauer who might have picked up my book in the break room more than 15 years ago and slipped the list of things she planned to pick up after her shift between one poem about death and another about the brain? Was this list maker planning to make a salad? Have a super cheap-o dinner party? Was it drunk food? I fell in love with the maker of this list because for just a moment my feet lifted from the ground, away from the hole I feel like I fall into each morning when I remember that someday very soon I will wake up and my son will be dead. Grief: a daily opportunity to wake up walking on air.

Wait! You’re also on stage. People are watching, looking, wondering, and I notice these onlookers the way you sense an audience during a performance — a dark, tense and whispering blob of expectations – without seeing them. Being on stage for dopey high school musicals or swing choir or opera vocal juries or now, mothering Ronan, are some of the times in my life when I’ve felt watched (“How will she dance with the leg?” “Wow, she can sing!” and “That poor mother, how does she do it?”) and also fearless. I can dance and I can sing and I can mother this beautiful child. Watch me. Watch me love him and live. Grief is a performance that the griever watches, too, nervous and sweaty, from the nosebleed seats. The encore is not the goal; the accolades are not of interest. I’m only trying to complete my lines without shattering like a big messy wet star all over the heads of the unsuspecting audience members. And I cling to time as much as I fear it, I welcome it as deeply as I long to stand solidly in its way. A version of fight or flight, I guess. A version of the new, spectacularly fucked up normal of parenting a terminally ill baby.

As I drove home the angle of the setting sun was just right, the Sangre de Cristo mountains were almost too perfectly outlined by the shadows of dusk, the dips and rises so clear it was as if you could reach out your hand and move them around. Pick off a few hikers. Pull out a few trees. A paint-by-number painting, a joke, a framed photograph with an “inspirational” saying written above, a mountain worthy of any Sound of Music nun to warble about. My normal day: a class, a trip to the store, a quick drive home. I wondered what would happen if those mountains fell, tumbled in a blaze of dust and dirt like the apocalyptic scene of a bad action film. I could actually imagine it, because nothing about this new normal surprises me anymore: not the joy of my son’s sweet face, not the terror of losing him. The mountains looked that close, that malleable, that easily rearranged, spit upon, an uncaring audience, a reminder of the brutality of nature and biology, the tyranny of fact. I opened the window and let one hand hang out in the air as the light shifted, faded, and disappeared as it does every day, without fail, relentless and necessary.

The word normal is gone; there are only notes on this day and then the next in one baby’s short life. There’s only the place we are now and then that’s gone, too, the show ending as quickly as light draining off the mountains, erasing shape and shadow, the audience gone, nothing more to see or judge, just that lone performer walking carefully through the aisles from the top row to the orchestra pit, inhaling the stuffy, mint-and-sour-breath air, fingering the backs of the oily, still-warm seats, sighs and claps still thunderous and real-time in her head, sweating and grateful and shimmering and strong, moving her fired-up limbs while her aching throat is quiet and no fight or flight but the heart beating two words in a tick-tock rhythm — watch me watch me watch me.

18 responses to “Family Notes: The “New” Normal

  1. I think of you walking the trail behind your place and think often of this Lermontov poem (the year he wrote it he died in a duel). There’s no title to it, which I think is pointed:

    Alone I set out on the road;
    The flinty path is sparkling in the mist;
    The night is still. The desert harks to God,
    And star with star converses.

    The vault is overwhelmed with solemn wonder
    The earth in cobalt aura sleeps. . .
    Why do I feel so pained and troubled?
    What do I harbor: hope, regrets?

    I expect nothing from life,
    Have no regrets for things gone by.
    All that I seek is peace and freedom!
    To lose myself and sleep!

    But not the frozen slumber of the grave…
    I’d like eternal sleep to leave
    My life force dozing in my breast
    Gently with my breath to rise and fall;

    By night and day, my ear would be soothed
    By voices sweet, singing to me of love.
    And over me, forever green,
    A dark oak tree would bend and rustle.

    1841

    It’s so moving in its rhymed and metered Russian, and it looks like this:

    Выхожу один я на дорогу;
    Сквозь туман кремнистый путь блестит;
    Ночь тиха. Пустыня внемлет богу,
    И звезда с звездою говорит.

    В небесах торжественно и чудно!
    Спит земля в сиянье голубом…
    Что же мне так больно и так трудно?
    Жду ль чего? жалею ли о чём?

    Уж не жду от жизни ничего я,
    И не жаль мне прошлого ничуть;
    Я ищу свободы и покоя!
    Я б хотел забыться и заснуть!

    Но не тем холодным сном могилы…
    Я б желал навеки так заснуть,
    Чтоб в груди дремали жизни силы,
    Чтоб дыша вздымалась тихо грудь;

    Чтоб всю ночь, весь день мой слух лелея,
    Про любовь мне сладкий голос пел,
    Надо мной чтоб вечно зеленея
    Тёмный дуб склонялся и шумел.

  2. Your writing is extraordinary and your journey is beautiful. I’m a physician who takes care of kids like your son, and so I see everyday the struggle, and the love, and the transformation. I am also a writer, and I appreciate your words. Hang in there. And thanks.

  3. God bless you and Ronan and thank you for your beautiful column in the NYTImes. I found it moving and meaningful beyond words.

  4. Monica Gettleman

    Emily,
    I read your words and am always so blown away by your writing. Having been through this journey with Brooke your words touch me in a way that is so utterly profound. Thinking of you, Rick and Ronan,
    Monica

  5. I just read your article in the NYT. I just want you to know that your story made me cry, a thing I never do. I cannot imagine your pain, or your bravery. Godspeed to you and Ronan.

  6. I looked for you and found your blog after reading your beautiful essay in the NY Times. I’m glad I can be present here, for whatever comfort that may bring. Your words were such a gift for me today.

  7. Emily – I am a stranger to you with little to offer. Please know that I will bear witness to your journey, wishing I could offer so much more.

  8. I found you through the NY article- first- and then Facebook, and your page, then a link, and now, here. The place that probably no mother of four- including a baby girl ten months old- should come when working on her mental health. Still I am here, and read many entries, and am totally at the mercy of your writing, your love for baby seal Ronan, the absolute honesty and precision and beauty of each essay here. I will add you to my blogroll, I will come back to read about you, and Ronan, and I will pray for the little sleepy eyed seal, and his mother kissing him in the coffee shop.

  9. katherine's mom

    Dear Emily,
    I’ve read your article yesterday in NYT “Notes from a Dragon Mom” and I just needed to somehow thank you. You were able to write so beautifully most of what my husband and I went through when our daughter Katherine was diagnosed with Spinal Muscular Atrophy at 1 year old. We had memorable and happy 9 years with her – 4 years of which was with her little sister. It has been almost 6 years when she passed away and the memories, especially the happy ones, were still so vivid. Just like you, once we were “freed” of expectations and accepted her medical condition, we were so happy and content. I’ve been crying since yesterday but a good cry – that we dragon moms are not alone. Enjoy each day with Ronan and I’ll be thinking of you and your family. Please give your baby an extra hug from me.

    Katherine’s Mom

  10. Your writing is beautiful and heartbreaking. Thank you.

  11. I have lived in fear of having my boy stolen away from me and now we seem to be allowed to back away from the fire, at least for now. How grateful I am, and how well I understand much of what you write. For us it is a brain tumor and unknown future, misery of treatment, loss of skills. The lessons of living the now instead of the future, wanting to stop time… I loved your line, ” A version of the new, spectacularly fucked up normal of parenting a terminally ill baby.” The words terminally ill and baby seem to be complete contradictions. I find the most healing from writing and applaud you for keeping at it. I did not always find it easy during the hardest times.

    Sending you wishes for sweet baby-time.

    Lisa

  12. I too am a stranger who stumbled upon your story. I imagine you wish for no pity and I have no comfort to offer. Just know that you and Ronan are touching every life you come near. Thank you for your writing and for sharing your little guy with us all. He is lucky to have you, his dragon mother, at his side. And we are lucky to have met, even virtually, this little dragon baby. Hugs and prayers to your family.

  13. if i could take a day of mourning for you,i would. if i could take a lifetime of mourning from you, i would. you are brave and ronan is so profoundly fortunate to have you as his mom and i’m guessing by extension, his father is deserving of praise as well.
    if it brings you any positivity, and i hope it does, my husband and i have been incredibly touched by you three. here’s to every minute of happiness, loving touches and joy for you all. may there be lightness in the darkness.

    all our love,
    staci, joe and louis

  14. Dear Emily,

    My wife and I read your story in the New York Times, and it brought tears to our eyes. I think that you said it all in a beautifully written and heartfelt narrative. Moreover, you have given all parents, ourselves included, excellent advice: to love our children in the here and now. Thank you and much courage to you and your husband. Ronan seems like an adorable boy.

    Perry & Olga Greenbaum

  15. your story touched me beyond words. i, too, have nothing to offer except a prayer and wish for you,for your sweet baby boy, for your husband and for your family. i wish that all of you treasure and and continue to capture every moment of snuggles, warm breath, and salty tears. there is so so so much love in your writing.your little seal gets to travel this path with SO MUCH LOVE around him. BIG, BIG LOVE. thinking of you and your family.

  16. donna Mossholder

    We just lost our son this year, he was a year old and spent his entire life in the hospital. The hardest part was being away from him, separated. He finally was able to come home on hospice and for two very bittersweet weeks I got to hold him night and day, read books to him and his sister, wake up to his sweet smell, kiss his big fat cheeks, caress his his beautiful face, and soak him up like a sponge. A friend of mine sent me your article on being a Dragon mom. Thank you for sharing your pain and anguish and your joy and introspect. I especially like the quote, “we offer inconvenient truths and foretell disaster.” I went to a birthday party with my daughter and when someone asked how I was I told them the truth, that I was a wreck…..then they politely said they meant how are you doing “beside” all of that………No one wants to really know just how horrible it is to have a terminally ill child and what its like to lose them. Your article summed up just about every feeling that I have had. Thank you again.

  17. “The Seal Lullaby” by Eric Whitacre is one of my favorite pieces- I sing it to my daughter all the time. After reading your post in the New York Times, and discovering your blog, I found myself at a loss for the right words. But the beauty of this poem and piece of music perfectly captures the love between you and your beautiful little seal.

  18. I found myself lost in weddings, which I can barely attend now without thinking about Ane, how she would never let me help make the plans, etc…the same with food. Our house was one from the beginning shopping at whole foods because she could not eat empty calories, and I hoped organics would lengthen her life.

    I now lose myself in poetry and my own writing, hoping someone finds my words…

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