When we hear about the death of a child or young adult, we are unsettled, unmoored. Such deaths are out of the natural order. And if it could happen to your child, it could happen to mine. Life is never safe once you have children.

When my daughter died of cancer at age 40, some people remained silent, distancing themselves, as if the death of a child might be bad luck, contagious. Other well-intentioned people hesitated, retreated, reaching for a safe landing.

“There are no words.”

“Your loss is unimaginable.”

“I can’t imagine what you are going through.”

Why is it so easy to find words for joyous occasions – births, graduations, weddings – yet we lose language when seeking words to console and comfort the bereaved? Death humbles us, revealing the empty spaces in language.

I understand. I do. My daughter’s death left me without words. It is incomprehensible to lose a child. Grief isn’t one emotion; it is a tsunami of sadness, anger, shock, pain, helplessness and deep yearning. Perhaps reaching for the shorthand, “There are no words,” is an easier way to say: There will never be words large enough to express this sadness.

After Alex died, I fell into many empty spaces in language, especially the space where I had no name for myself, a parent who has lost her child. Names exist for a child who has lost a parent (orphan), or for a woman who loses her partner (widow), but what do we call an orphaned parent?

Recently, though, I stumbled upon vilomah – a Sanskrit word that means “against the natural order.” The word vilomah embraces the primal injustice of outliving one’s child, inverting the generational order, an upside-down world. Parents expect to predecease their children, not bury them. To be a vilomah is to become an unwanted messenger from a distant point of human existence.

Bereaved parents – vilomahs – aren’t surprised when we learn the word bereavement has its roots in Old English, meaning to deprive, rob, take away. The future tense has been rearranged: Our children have been deprived of their hopes and dreams – their future – and we, their parents, are robbed of our future with them.

But placeholders such as “there are no words” close off conversations when they most need to begin, forcing a parent who has lost so much to find words to comfort the speaker. Bereaved parents need their friends and families to be safekeepers, using specific words to describe our beautiful children, reminding us that our children live on in their memories.

I needed words of comfort to bring her back – stories about her light and love, her acts of kindness and courage. I needed to hear people say her name – Alex – and surround me with words of love.

Here’s what I want to say to everyone: be brave. There are no perfect words to comfort the bereaved, no comfortable words for something so uncomfortable. You can’t fix my loss, but you can hold in your hearts everything about Alex that made her specific and human – her love for birthdays and balloons, pandas and popsicles, dresses with pockets, Japanese art and fashion design, running marathons and then ultramarathons, making everything look so easy.

You can reminisce joyfully about photos of Alex at the finish line of her 100-mile runs, beaming with a thumbs-up, or about the ways in which she celebrated life’s small pleasures and brought family along for the celebration. Her beautiful curls and welcoming smile that felt like a hug, or the big-hearted gifts she gave – she was a spectacular gift-giver.

Or her love for s’mores and ice cream cake, sushi and dumplings, for growing dahlias and daisies, for the multitudes she contained. These loving, specific words capture the light Alex carried, the vividness with which she lived her life.

When someone says, “There are no words,” I hear “That’s all there is to say,” and when they say, “Your loss is unimaginable,” I hear “I will not try to imagine your loss.” These expressions allow speakers to retreat, staying emotionally adjacent to the bereaved parent’s loss, leaving us isolated, sealed off, deprived of moments of true connection.

When friends and family tell an Alex story or ask for one, they open the uncomfortable spaces in language and let my daughter live on in words.

Bereaved parents live with the geography of our grief, becoming familiar with its peaks and valleys, its edges. Our grief doesn’t disappear; its tail is long. No worries if you didn’t bring the casserole or cannoli; there is plenty of time to offer comfort to a bereaved parent and honour a child’s memory.

I am grateful to the many friends who continue to lift up Alex’s name and carry grief with me – like the neighbour who cooked Alex’s favourite dumplings each month for an entire year, leaving them on our front porch with a simple one-word note reading “love”. For the friends who plant dahlias to honour Alex, or wear dresses with pockets remembering her, and the friends who are listening presences, lingering in the backyard to talk about Alex.

And I am always grateful to the wonderful friends and family who put April 2, Alex’s birthday, and July 15, the day she died, on their calendars, knowing these are both rough days for me and important days to honour Alex’s memory.

A Jewish proverb reminds us of why we need to try to fill the empty spaces in language: “One dies twice – the first time when a body stops breathing; the second time when a name is no longer spoken.”

To a bereaved parent, silence feels like forgetting. Whenever someone speaks the name of my beloved child and asks about her, her life story is kept alive.

If you know a bereaved parent, reach out with loving words and gestures, show up and help carry their grief – and do it again. And again. Become safekeepers of memory – tell a story; ask for a story. Help a bereaved parent find the spaces where their beloved child continues to live.

There are always words.

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• Mind, open Monday to Friday, 9am-6pm on 0300 123 3393.
• Samaritans offers a listening service which is open 24 hours a day, on 116 123 (UK and ROI – this number is FREE to call and will not appear on your phone bill).
• CALM (the Campaign Against Living Miserably) offer a helpline open 5pm-midnight, 365 days a year, on 0800 58 58 58, and a webchat service.
• The Mix is a free support service for people under 25. Call 0808 808 4994 or email help@themix.org.uk
• Rethink Mental Illness offers practical help through its advice line which can be reached on 0808 801 0525 (Monday to Friday 10am-4pm). More info can be found on rethink.org.