Edwina's Story - My Son Died When He Was 311 Days Old

Edwina's Story - My Son Died When He Was 311 Days Old

Trigger warning – this article talks about the death of a child xx

You know those few times in life when you meet someone and you feel like a better person simply because of the impression they leave with you? This is how I feel since meeting Edwina Symonds. And when I say “meet”, I mean send some emails back and forward but there is this a profound grace, resilience and an unwavering strength that radiates from this amazing woman.

I asked Edwina to feature as a Mummy Matcher guest after reading her blog www.thegriefyway.com which she started after her baby boy passed away in 2018. 

Get the tissues ready ladies, this one hits hard but not in the way you would expect x

You lost your son Sebastian “Sebby” in 2018. What happened, why did he die?

Sebby died on July 31, 2018 when he was 311 days old. 

He was a healthy and thriving bub, we never knew anything was amiss. 

At six months of age, he contracted a rare meningitis, and he had a very long seizure and was airlifted to Sydney Children’s Hospital. At that stage the doctors were none the wiser as infantile seizures in meningitis cases are not unusual. 

It wasn’t until around a month later when he had another significant seizure that the neurology and genetics teams realised something was not right. Within a month he was diagnosed with a genetic mutation called HCN1, which caused dangerous epileptic seizures. 

He had a few further episodes, but his epilepsy, and the seizures, became well controlled with daily medication. When he died, he had been seizure free for 10 weeks. 

He was not able to recover from his last catastrophic seizure, which he had on Friday 27 July. 

There are only around 60 known cases worldwide of HCN1. The children that live with this type of epilepsy tend to have a range of special needs, and sometimes other medical conditions,  which Seb did not. Out of those 60 cases, only two other healthy babies died and no one really knows why. So our little lion was the rare within the rare. 

Baby on life support. Organ donation.

You are living every parent’s worst nightmare. On your website there is a sentence “I am not defined by the loss of Sebby” How have you been able to find such strength?

I wouldn’t define myself as being “strong”. I survive, of course, but everyone faces challenges in their lives and I can only hope that losing Seb is the worst challenge that will ever hit our family. I live for him. I try to take advantage of the everyday opportunities that life gives me because Seb doesn’t get to experience what I can. 

Every moment, of every day hurts when you live without your baby. The pain is overwhelmingly isolating. But I don’t have options. I must keep going. I have a marriage to nurture and another beautiful child to build up.

I know one day that Seb and I will meet again, and sometimes I beg for that time to come sooner, but I don’t wish my life away.  

 

Can you describe what it was like coming home for the first time without your baby?

To be frank, fu#*ing horrendous. 

It’s a memory so full of hopelessness and despair. How can you be a mother without your only child?

Seb was in every room, his toys strewn, his bottles on the drying rack. But worse, we had left the house via Ambulance in a mad rush, so his clothes and medication were strewn across the lounge room. I wanted so much for his clothes to smell of him, for that smell to bring him back. 

I remember climbing into his cot and just sobbing. The idea that he was taken from me without prior warning is what baffled the most. He was completely fine the day before the seizure, he had his bottle at night and fell asleep in my arms. I wish I had some warning, just to keep him awake for an hour longer, to hold his gaze for an extra minute. 

 

Since Sebby passed away you have had another son, Dash. How old is he and what is one thing about him you adore?

Dash is just the best! He is 14months which is such a fun time. 

I was 17 weeks pregnant when Seb died. We did not know it was a boy, but my husband made the most wonderful decision in those moments and asked if we could have an ultrasound, to tell Sebby a “Big Bro secret” while he was on life support. So Sebby died knowing that his little brother was on the way to comfort us. 

We named Dash after a poem, called The Dash, which we read at Seb’s funeral. It’s all about how when you die, your gravestone will read two dates, but The Dash in the middle symbolises your life. Dash is everything that encompasses and more. He is so funny and sweet natured, a true grubby, cheeky boy in the making. 

What was pregnancy/birth/those first 12 months with Dash like? 

The birth was quite intense for everyone. I have had two very long labours. When I birthed Dash,we were so conscious that Seb was in that room with us. I don’t think I have ever been so overwhelmed with emotion. I was so happy to be holding my precious little boy but so sad that this little boy was not my Sebby. 

Sebby’s delightful pediatrician Emily was there for the birth, I got to cuddle him for a little while but he needed some extra care so I was able to hand him over having complete faith that he was in the right hands. Once everyone had left the room I was alone and it was so quiet, but I knew Sebby was with me. 

Welcome to the world dash

Are you a ball of anxiety waiting for something horrible to happen to Dash?

My husband and I are not helicopter parents in the least. I actually think we are even a bit more relaxed now because we have seen the absolute worst. When you have been inside the four walls of a Children’s ICU, nothing much seems as intense ever again. The nurses and doctors there are the most phenomenally calm group of people in the face of very sick children and truly scared parents. 

You cannot prepare for the worst. In my mind, there is no way that Dash is going to have anything worse than a few broken bones and some stitches in his life and if there is anything worse, we’ll deal with it then. 

I urge parents who stress about their children to just let them be. The worry and the anxiety not only affects your own mental health, but it absolutely affects a child’s learning and development. 

There is no point wrapping kids in cotton wool because play and pushing limits is how they learn to live a big life. We look at Dash and just have to believe that Seb is inside him, enjoying all the same games, toys and experiences, including the scraped knees and head knocks. 

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How do you make sure Dash knows who Sebby is?

Seb is so present in our lives. Dash will always know that he is the little brother. 

But children are so impressionable; we never want Dash to feel that he is any less important than Seb so we are conscious of our language. I would love if one of his first legible words is Seb as we say hi to him all the time. 

We have huge photos of Seb up and the nursery is both the boys’ room so all the usual baby mementoes are in there. We planted a tree in the backyard that springs the most gorgeous bright flowers; and also have a plaque in a beautiful spot on our local lake where we can go and sit and Dash can climb and paddle in the little beach. 

You have started a blog called The Griefy Way.
Can you tell us about how/why you started this?

My blog was a cathartic place for me to focus my energy. I initially wrote it for Sebby, not thinking that it would necessarily be wide reaching. 

I think the best feedback I have had from friends though, is that it has helped them to understand my pain. So many people don’t know what to say or how to feel when a friend is in trauma, so breaking those barriers down really supported them, because they are grieving for Seb too. 

It has also morphed into a place where other women, who have lost children, have found me, which I love. If I can help only one other mother feel more comfortable sitting with her grief, then all the time and energy I put in is worth it. 

What are 3 pieces of advice you would give to a Mum who has just lost her child?

1. Grief takes time. Let it. There is no “shoulds” on the way you feel, the way you act, the time it will take for you to return to a pattern that looks “normal”. If anyone in your life adds any pressure to “move on”, remove them – they aren’t your people. 

2. People are so afraid of grief and condolence. They will say stupid things – let it wash over you, it is not personal. 

3. Know that one day, you will smile again. You will find joy. 

What are 3 of the most well meaning but hurtful things people have said to you since Sebby passed away? 

I have so many stories and will one day write a book on condolence because it truly is a lost art.

1. Most idiotic things that people say come from a place of them making the situation more comfortable for themselves. 1. “oh well at least you have Dash to ‘replace’ him. Never ever say that to a parent who has lost or child. Or even to a mother who has miscarried “at least you got pregnant”. No. 

A mother and a child have a bond that no other person can understand, don’t interrupt that in any way with careless words.

2. “It’s too hard for me to come to your house because there are too many reminders of Seb there”.

This lack of emotional intelligence is astounding. Of course my home is bursting with memories of my baby boy. He thrived here and he always will. I will always ensure that everyone knows that I have two children. If that makes anyone uncomfortable, they can leave my circle.

3. My most challenging period was when I returned to work. So many people flat out refused to acknowledge it and just said “hey welcome back!”, as if I had just been on holiday. 

People hate feeling uncomfortable and awkward so, knowing that I have a big personality, many people expected me to set the tone of the conversation and thought it was ok to ignore the elephant. It wasn’t ok. 

My best advice about condolence is to not overthink it. You don’t need to know what to say, no one does, but that doesn’t mean you say nothing.

There are no words that are ever going to make grieving parents feel any better, so just say something. I had lovely letters and emails from complete strangers who were touched by Seb’s story, yet to this day we still have ‘friends’ who have never brought it up.  

Knowing that people care and are there is all the support a grieving parent needs. 

If all else fails “I am so sorry for your loss” is everything you need to say. 

 

When you and I first started “talking” you said that you had been to support groups for families who had lost children and you left feeling sadder than when you first got there! What advice do you have for Mum’s feeling this same way?

We are eternally grateful to know exactly why Seb died. It also allows us to always test any future children to specifically rule out the error. 

When we got to a bereaved parents group, we met other families who did not get this gift. Their children had died in accidents, or SIDS or respiratory illness in their sleep, leaving them with extreme feelings of guilt and “what if..” moments.  

We have no guilt, we have no what if, we know Seb’s life was planned to be short, we had no say. Seeing those other families suffer with such another level of pain was too overwhelming for me. At that time, I could not even begin to imagine what they were growing through, which was not at all helpful to my own grieving. 

Do you think a service like Mummy Matcher would/could have been useful?

I think Mummy Matcher’s biggest advantage is that it is Mummy led. 

Many mums don’t want those connections when they are first offered to them. Eg. when they first lose a child, or get a diagnosis, or have a child struggling emotionally. But they need them later, when they are ready to seek them out. 

Mummy Matcher’s success lies in the fact that women are doing it on their own time. 

In my case, parent bereavement groups do a stellar job of allowing parents to debrief and feel their pain openly, but now I always want to talk about my Sebby because he lived, not because he died. Meeting women who are at a similar stage of that journey is comforting as opposed to uncomfortable. 

I am always willing to help other mothers on the start of their child-loss journey, but I hope I can also inspire them a little, to know that it does get better. You do learn to find comfort in your grief. “Because grief is just love, in a different box.”

 

Edwina and Dash

Edwina is a Sydney based mum of two boys. She writes a blog on grief and condolence, and is a passionate supporter of Organ Donation in Australia, as her son Sebastian donated his organs when he died. You can read more at thegriefyway.com

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3 Comments

  1. I lost my daughter Dakota on 5th June 2019 aged 15.

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