The unwritten sympathy card. The phone number not dialled. The quick dodge into the next supermarket aisle.
They are all symptoms of the “I don’t know what to say” malaise when serious illness or death strikes somebody else’s baby or child. We feel totally inadequate and almost guilty if our own children are running around full of life in plain view.
Note to self: “It’s not about you.” Our own discomfort is nothing to the pain our friends or extended family members may be going through, yet it can paralyse gestures of decent human kindness.
“You find out who your friends are,” is an oft-repeated phrase by parents who have experienced bereavement or serious illness. What does that say about the rest of their social circle, their neighbours, their workmates? That they didn’t care? Or they didn’t know how to show it?
We like to think it is the latter – coupled, of course, with the inevitably relentless flow of busyness that propels everyone else along, leaving behind those stranded by prolonged crises or grief.
So, what should we say or do that might be helpful? Of course, there’s no one ideal strategy, as people and circumstances vary greatly, but there are common themes.
Don't equate a miscarriage you may have suffered at three months with a neonatal death, as they're very different losses
UCC lecturer Marie Cregan, who founded Féileacáin – the Stillbirth and Neonatal Death Association of Ireland – believes these deaths are very misunderstood and a lot of people don't realise the depth of pain the parents go through. She lost her youngest daughter, Liliana, through stillbirth a day before she was due, in 2006.
Misconceptions about what it’s like to lose a newborn make it a bereavement where sympathisers seem more likely to put their foot in it. Cregan experienced this herself and also hears it from other parents.
‘Most stupid things’
“People say the most stupid things,” she says. A common one is to remark that at least you already have a child or two, or that you’re sure to get pregnant again soon.
These babies “are little people who didn’t make it for whatever reason. They are not a replaceable commodity – they were always going to be your first-born, or your second-born,” she says.
“Some people just don’t get it – they don’t have the insight. If you don’t get it, that’s fine. Don’t go and make it worse. Send a card with sympathy.”
When her mother died, “people didn’t say how lucky I was that my father was still alive,” Cregan continues. Yet when Liliana died, people were happy to point out she already had a household of children and she needed to look after them “as if I had been a bold girl – that is the sort of thing that drives the anger”.
Don’t equate a miscarriage you may have suffered at three months with a neonatal death, as they’re very different losses. “Don’t say, ‘I know what you’re feeling’ because you haven’t a clue.”
She acknowledges that sometimes people avoid you because they are afraid they will say the wrong thing. But they need to take that risk.
“Leave it short,” she advises, pointing to the tendency that many have of gabbling to fill a silence. That’s when we are in danger of unthinkingly saying something at best unhelpful, at worst hurtful.
If you are about to start a sentence with “At least . . .” don’t say it, Cregan cautions. The bereaved person may say something along those lines, if they are processing the grief, but that’s very different.
“There is nothing wrong with getting it wrong; being wrong is the thing,” she continues. “Put down the shovel when you see their face.”
However, don’t flinch from displays of emotion. “If they burst into tears, that’s okay. Don’t say ‘I didn’t mean to upset you’ – you didn’t upset them, they are upset.”
Cregan wonders why there is still a stigma around having a funeral and it does mean there isn’t an obvious way for neighbours and acquaintances to pay their respects. If the parents do have a ceremony, it’s usually only for very close friends and family.
Get a candle, or a plant, a card, to say you’re so sorry and thinking of them, she suggests. The focus tends to be on the women but don’t forget the fathers.
Return to work
The return to work is another challenge but it’s a mistake for colleagues to think it’s better they don’t refer to what has happened for fear of upset. Then, she says, if a workmate gets pregnant, there are the Chinese whispers “will we tell her, won’t we tell her”.
When she went back after losing Liliana, a colleague who became pregnant took her aside and told her before she told anyone else. It was a thoughtfulness that she appreciated
Often, mothers don’t have time to grieve because, if the biological clock is ticking, they feel under pressure to try for another baby straightaway. If they get pregnant, everybody thinks they’re “fixed”, says Cregan, even more so when that baby arrives. But it’s a subsequent pregnancy that can be very hard.
Families need practical support. If there are siblings, they need help to keep the siblings' lives as normal as possible
Everybody heals differently, so be patient with your friend or family member. Grief and loss are exhausting; the physical impact means they may not be able to do anything for a while, she adds, “and the while may be a long while”.
The Jack and Jill Foundation helps parents whose babies have survived birth but have severe intellectual and physical developmental delay. Its nurses support families in looking after such children at home, up to the age of five.
Whether or not the parents knew before the birth that they were having a baby with a life-limiting condition, "the most important thing is that everybody welcomes the baby – that families and friends acknowledge that the baby has arrived", says Saundra Nolan, a nurse manager with Jack and Jill. Give cards and presents as you would have if the baby had been born without health complications.
“People say ‘I don’t know what to do and I don’t know what to say’. You don’t actually have to say or do anything,” she explains. “We can’t make the baby better. Sometimes you just have to listen.”
Families need practical support. If there are siblings, they need help to keep the siblings’ lives as normal as possible.
“They need food, they need housework done and we can all help in those things,” points out Nolan. Friends and families can organise lifts to make sure siblings don’t miss out on activities and birthday parties.
‘Stay in touch’
“Stay in touch – from near and far,” she stresses. “Just because parents don’t reply to your text doesn’t mean they don’t appreciate it. In time, when they’re able, they’ll get back. It’s hugely helpful for them to know that support is around. Don’t take it as a signal you are not needed.”
The demands of nursing a child at home can isolate families. “Once the initial crisis is over, we all just go back to our lives,” says Nolan. “Don’t forget your friend or family member who is now looking after a maybe chronically sick child.
“You need to acknowledge that your friends’ lives have changed and long-term planning is difficult. They can’t commit to a wedding in six months’ time or a friend’s birthday in a fortnight.
“Don’t exclude them. If they can make it they can make it, if they can’t, they can’t.” Assure them it’s okay if they can’t show up in the end for whatever reason.
Jack and Jill nurses see families that are hurt by losing friends. “We appreciate lives are busy – other people have work and they have their own children. But do what you can and stay in touch.”
After the death of a child with complex care needs, people might make the mistake of thinking it must be a relief.
“The child is as precious as any other child,” Nolan stresses. It can be very hard for families who have dedicated their lives for many years to the child.
“It’s a labour of love – it has been what they have done for many years. The loss is even harder.”
For more information see feileacain.ie and jackandjill.ie
‘Hit by a baseball bat’: when your child gets cancer
Glenn and Colette Kiernan became concerned when their eldest daughter was struggling to eat one Weetabix in the morning when she usually ate two. She also seemed to be feeling the cold and had some spots on her skin.
Within four hours of bringing seven-year-old Ashleigh to a GP, the couple were in Crumlin Children’s Hospital, being told it looked like she had leukaemia, with doctors only having to wait on blood test results to diagnose the type.
It was “like being hit by a baseball bat”, says her father Glenn, as the family of five in Lucan, Co Dublin, were thrown into turmoil.
Ashleigh’s treatment for acute lymphoblastic leukaemia entailed an initial two weeks in hospital, with Glenn and Colette trying to provide 24-hour cover between them. Family members stepped in to share responsibility for taking their two younger daughters, Isabel and Matilda, for a few days here and there as they could.
“That got us through the start of it,” says Glenn. Matilda was two and too young to know but four-year-old Isabel, although they couldn’t really tell her what was going on, was aware something was up.
Ashleigh had no interest in wearing a wig, so her bald head attracted stares
When Ashleigh came home, she was confined to bed at the start and the household needed to revolve around her needs. It was hard to do a proper shop, Glenn recalls, so all help from friends, neighbours and family on providing meals was much appreciated.
“A stew or casserole was a godsend – the simple things meant more than anything else,” he recalls.
Whether to offer help or just go ahead and do something can be a dilemma for those looking on. Personally, Glenn preferred when people didn’t ask because if they did, “you feel you are begging”, and his stock response was “no, you’re grand”. But he was very grateful to those who just turned up with a cooked meal.
Generally, he found people tended to become “a bit stand-offish”. Friends’ phone calls dwindled.
“I don’t know if they were afraid you would ask for help but they went ‘hiding’. I have a lot of acquaintances but few friends – that is one thing I did find.”
They might ring eventually saying "'I thought I would just leave you alone'", he recalls. "But the odd day you would have liked somebody to have picked up the phone and said 'well how are you?'."
Sometimes, he and Colette needed to be able to talk to somebody other than each other, he explains, and that’s where friends could play a vital listening role. It allowed them to “let off a bit of steam – talk your fears through. There is enough worry in the house without adding to it.”
Ashleigh also felt a bit isolated, as she missed most of the rest of second class.
“I had one really good friend and when I came out of hospital she would come over as often as she could and tell me what was happening at school and all.”
Other friends never said anything to her when she was sick and she only saw them when she went back into school the odd time. However, she acknowledges they were very young and nobody knows what their parents chose to tell them.
Ashleigh had no interest in wearing a wig, so her bald head attracted stares. On one occasion, when her mum was doing Swim a Mile with a Smile, a group of older boys started looking and laughing at her. She knows loads of people go through that but it is hard when it is directed towards you, she says.
However, she acknowledges people are curious: “It is not every day you see a kid with cancer.”
Despite wanting visitors and company, both Ashleigh and Glenn stress that it’s important anybody with a sniffle or feeling slightly off stays away from cancer patients as their immunity is compromised. Please, they say, don’t take offence if you are not let in to the hospital room or the house.
Also, adds Glenn, if you want to bring a gift to a sick child, don’t leave the siblings out or bring something they can all share.
After 2½ years of chemotherapy and five years in remission, Ashleigh, now aged 15, has recently been given the all-clear and her family are ready to move on. She, however, is happy to remain a member of CanTeen Ireland (canteen.ie) – a support group for teenagers who have or have had cancer.
“CanTeen is a bit like a second family. We could go on a weekend together and not speak a word of cancer and there would be other weekends when we would be up talking about our different experiences – good things and bad things, comparing things and tips for getting through it.
“I would tell a stranger on the street that I have had cancer – it really doesn’t bother me,” she adds. In contrast, she has a friend who was treated for cancer in hospital and, as soon as she was out, never wanted it mentioned again.
Dos and don’ts
If you are trying to support a family coping with a child’s serious illness or death:
- Do remember it's not about you and your discomfort at not knowing what to say or do.
- Do be honest: if you don't know what to say, just be frank: "I don't know what to say . . ."
- Do keep it short: gabbling can lead you into unthinking territory.
- Do refer to a child who has died by name.
- Do stay in touch – both in person and remotely.
- Don't say "I know how you feel". You don't.
- Don't say "I didn't mean to upset you" at the sight of tears. You didn't upset them, they are upset.
- Don't stop inviting them to events just because you think they can't or won't want to come – that's their decision.
- Don't forget the birthdays and anniversaries of a deceased child.
- Don't use religious platitudes – leave believers and non-believers to their own thoughts.
