'Say his name.' The 5 things I've learned from losing a child.

In 2018, Edwina Symonds and her husband Ant were told their 10-month-old son Sebastian ('Seb') wasn't going to make it home. It was completely, shattering news for the couple. 

Seb had a very rare genetic disorder, and it was a catastrophic seizure that meant his brain died before his body. This gave doctors the small window needed for organ donation to be raised, Edwina explains to Mamamia.

"Although we were in the depths of sudden grief, we wanted to save lives from this tragedy, and it was a decision we made very easily."

Only two per cent of people who die in hospital each year can be considered for organ donation. Edwina says she feels thankful Seb's kidneys gave someone new life.

"I always put myself in the shoes of the other family who received that call to let them know their loved one was going to survive thanks to Seb's donation. That changed someone's life, and that is so incredibly special," says Edwina. 

Currently, 1,800 Aussies are on the waitlist for an organ transplant, with an additional 14,000 people on dialysis who may need a kidney transplant. So the more organ donors we have – the better. 

Amazingly, one organ donor can save the lives of up to seven people, and help many more through eye and tissue donation. As Edwina says: "It's the best gift you can give. Especially during DonateLife Week (Sunday 23 to Sunday 30 July). It's crucial to tell your family you want to be a donor – someone's life may depend on it."

For years now, Edwina has written beautifully about her son Seb, telling Mamamia that talking about him helps with the grief and keeps the memories alive.

Since the passing of Seb, Edwina has learned a lot about the realities of child loss. She hopes these learnings can help other bereaved parents through their own experiences, and also help others understand how best to support someone who has lost a child. 

1. "A lot of people will say to you 'I don't know how you do it'."

In the five years since losing Seb, Edwina and her husband Ant have heard countless statements like the above phrase that are actually really insensitive, even if well-meaning.

"I've written so much about what not to say to grieving parents – the list is long. One of the worst is: 'You're so strong, I don't know how you do it". My response is, well I don't know how I did it either – I just had to do it. There's no method to get to where I am today, it is just me putting one foot in front of the other," Edwina explains.

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Ultimately, for those unsure what to say to someone who has lost a child – there's nothing you can say to make the pain any easier. 

For Edwina, she says often the best thing to do is acknowledge how terrible the loss is and be there for those parents throughout it all.

2. "For me, time makes a difference."

Edwina says her grief has shifted over the years, and she is now in a position where she can talk more about Seb. And that brings her a lot of comfort.

"Some days are awful. But time makes a difference. Obviously, a lot of therapy has helped. But also connecting with other humans, particularly other parents who have lost a child makes a difference," she says. 

"I volunteer a lot with the Red Nose Support Line, and I think one of the greatest gifts I can give to parents who are freshly grieving is I can tell them they're going to be okay."

3. "Say his name."

For Edwina and Ant, they have lost friends from their inner circle because these people found it too hard to interact with Edwina and Ant following the death of Seb. 

"People are awkward. They don't know what to do, they don't know what to say. So they shy away from saying the child's name. Some couldn't talk about it with us, they wouldn't say Seb's name. I'm far less open to bulls**t now," Edwina says.

"Although there are some people we're no longer friends with, we have found our own tribe of people. There's an absolutely beautiful community of bereaved mums online who share their stories. It's interesting, you find these people in your lives now who you didn't necessarily think would be your people, but now we're so glad they are."

It's important for those around Edwina and Ant to say their eldest son's name and acknowledge his life. It's the least they can do.

"Talking about him absolutely helps. It keeps his memory alive. It allows my children to know their big brother, and he's not hidden away in our lives. And I am so proud of the fact that I'm a mother of three – not two – and I will consciously correct people if they make that mistake."

4. "Pregnancy after the loss of a child can be a complex experience."

Whenever Edwina hears a sentence begin with "at least", she immediately winces. And for good reason, based on previous experiences.

"I remember when I was 17 weeks pregnant with my second child, and someone said to me: 'At least you're pregnant and can have another one after Seb'. It was almost like they were implying one child can replace another, and it was really unhelpful to hear that," she notes.

"When I was pregnant with my second child, there were all these heightened emotions because I was still so deep and dark in my grief over Seb. I would just never want someone to think or assume Seb is replaceable, because he is not."

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5. "Grief isn't linear – and that's okay."

When it comes to couples who have experienced a serious trauma, like the death of a child, it often puts a large amount of strain on the relationship, causing them to split.

Edwina tells Mamamia one of the most helpful things she learned during this process was understanding that no one grieves the same – and that's okay.

"My husband and I tried to grieve together at the start. But men and women are so different, and we have different ways of responding to emotion. We learned it's okay to grieve alone and grieve outwardly with other loved ones rather than just the two of us. That's how you sustain yourself and the relationship."

These days, Edwina finds a lot of happiness in spending time with her family and advocating for organ donation.

She feels comforted knowing her two youngest children are happy and healthy, although she has just entered toddler-time with her youngest, so that's proving a bit chaotic! 

"It's really exciting to know they're going to grow up and live a beautiful life," she says. "I know they're also going to be confident and comfortable in talking about grief, because they've got a big brother who is in heaven and that's okay for them."

Edwina will always take solace in the fact Seb was able to save a life. It's the ultimate gift, and a gift she hopes we are all open to give if the time ever comes.

DonateLife know 80 per cent of Australians aged 16+ support organ and tissue donation – yet only seven million are actually registered. They want the number to be closer to 16 million.

It's a gift all of us over 16 can sign up to give as well, given it only takes one minute register. Plus, it's having those continual discussions with loved ones to remind them of your choice to donate, so that in the event it comes down to them making the decision on your behalf, they make the right one. 

"I want people to know it's really important to have a conversation about organ donation. Yes, death can be scary, but if you had the option to save someone's life, surely it's the decision we all would make," says Edwina.

"Seb died during DonateLife Week in 2018, and to me I think that was sort of a sign from him that it's my legacy now to make sure people know how important organ donation is. For us, donating Seb's organs was a really beautiful process. I think it's the most beautiful experience you can have after a death."

It takes just one minute to register as an organ and tissue donor. Donate a minute to give someone a lifetime, and register at donatelife.gov.au or with three taps in your Medicare app.

Red Nose provides specialised bereavement support free of charge to any person affected by the sudden and unexpected death of a baby or child during pregnancy, birth, infancy or childhood. For support, you can call the 24/7 Red Nose Grief and Loss Support Line on 1300 308 307 or visit rednosegriefandloss.org.au.

Feature Image: Instagram/@weenie84