Nicole Bowes no longer has much patience with people feeling awkward about the death of her child. "I know it might make you feel uncomfortable to talk about it. But you get to go home later, this is my life. You can afford to feel uncomfortable for a couple of minutes, " she says.

Five years ago on Monday, Nicole and her husband Dan lost their baby son Ben. He was four months old and died after a freak accident near their home in Helensburgh, when shopping fell across his face in his pram, and interrupted his breathing.

"It is not nice to have to give your child CPR," she recalls. Her efforts were in vain - Ben had suffered catastrophic brain damage and in the afternoon of the same day, she and Ed had to take the decision to turn off his life support.

Dealing with the grief took them years, and talking so publicly about her experience is only something she has recently been able to do. She is doing so to promote a new project which will help break the taboo on talking about the loss of a child – by adapting parents' stories on stage. Run by the Scottish Cot Death Trust (SCDT), it has been awarded Big Lottery funding of £77,130 and will be co-written by playwright Lisa Nicoll.

It is needed because the topic is still horribly taboo, as the Bowes family found out. From the relative who reacted by saying: "oh is it still about that?" when Dan was upset, to the person who told Nicole "these things happen for a reason" before Ben was even buried, they were astonished how isolated they felt.

"The onus is on the person who has lost a child to bring up the conversation. Even then people skirt around it, run away. We no longer speak to the godparents of our two eldest sons. They just couldn't handle what had happened. People are scared of getting it wrong. It is taboo like cancer or HIV."

What people should know is that cliches about silver linings don't help, and neither does being afraid of emotion, she says. "People are trying to make it better, but you can't, you are never going to be able to. It is better to admit you don't know what to say, or to say 'that's really sh*t. I’m here for you. If there's anything I can do just ask'."

But the play which is being written based on real families involved with the SCDT is another really exciting way of confronting the taboo, Nicole says. "It is a fantastic concept. People who have lost a child can tell their story and people who haven't, will come away understanding a bit better."

The bottom line is that everyone grieves in a different way, she says – including men and women. "Dan had took some time to process it, which caused some tensions. But we've been together since we were 16 and we weren't going to let it split us up. More than two thirds of couples separate after the death of a child," Nicole says.

Lynsay Allan, SCDT Executive Director, Scottish Cot Death Trust, said, “The power of this project is that we don’t know at this stage what the story of the play will be. The families taking part are the real story tellers and creators. They own this process.”The new play will be premiered at the International Conference on Stillbirth, SIDS and Baby Survival in Glasgow in June next year, before touring round Scotland.