Disclaimer: I write this post purely from my lived experience. My qualifications are a Masters in being a mother and a PHD in dealing with losing my child. This does not mean I got it all right or all wrong, there is no right or wrong. It just means that I qualify as an expert to speak about this. I know I parented differently to a lot of other parents.
Many of my decisions and choices were, and are, unconventional and have been frowned upon or queried. They worked for my son Ben and me. I did not deal with losing Benny like many other people have dealt with their losses. My way works for Benny and me.
I have no judgement on what anyone else thinks or does and it’s none of my business what you think of me. I am 100% responsible for the choices I make and the actions I take, and I own them all.
When it comes to losing a child, we all do it differently. I am not right or wrong.
I am Dalya, Ben Shaw’s mum.
I want to begin the next few weeks, at what I believe was the beginning of the change – the birth of Dalya 2.0, that was built upon the original version.
When I had that first conversation with the Dr’s and they told me ‘it’s not looking good’, I was crystal clear on a few things. They were to do whatever they could to ‘make’ it look good and there was to be absolutely NO negative talk in his room. If they had to have a conversation about how bad he was doing or how he was not responding they were to take it outside his room where he could not hear. My instructions were specific. Only positive language was to be used in his room without exception.
I remember feeling the wildness that would have accompanied the same look in my eyes and the absolute non-negotiable conviction I spoke with. A door had opened into a part of me that contained a reinforced supply of strength and energy. Once opened, this door never closed. The unlimiting stock of the skills and characteristics I need(ed) to move forward, remain available for me to draw on at any time.
I consider myself lucky to have been blessed with challenges in my life from very early on and where I would have been justified in adopting the ‘victim’ attitude, I chose to live my life ‘glass half full’. To be positive is one thing but when your child’s life or death may be influenced by the language they hear and the energy they are exposed to, at the most crucial point ever, it’s a whole different ball game.
The time we spent in the hospital, I ran on adrenaline. People came and went, and I don’t even recall most of that week. I don’t remember many of the people I spoke to, or conversations I had. I slept for a total of a few hours the entire time, and strangely never felt hungry. My focus was maniacal and 100% on Ben. My thoughts were only of him. I remained in the present moment for long periods of time.
The hardest thing a parent will ever do is leave a hospital for the last time without their child. NOTHING will ever be harder than that moment. What follows over days, months and years is not more difficult. It is different and each task will leave its mark on the parent forever. The transformation that happens as a result of the loss, develops over the rest of that person’s life.
The adjustment is not static, it is continual, ever changing and ever challenging.
I had a good friend up until a few weeks after Ben passed. In his last message to me he wrote, ‘you are not the same person as you used to be, and I don’t think you ever will be’. We had been close for some time and this was the last contact we ever had.
NON NEGOTIABLE EXTRA #1:When you lose a child you are NEVER the same as you were before.
The aim is to accept the new you and to create a new life around this person you don’t recognise.
Everyone else has this same choice. To accept the new you and create a new relationship around this person they may not recognise. It was NOT my responsibility to make it ‘easier’ on him or anyone else. He chose to have nothing more to do with me and therefore avoid having to deal with Ben’s death. For the record, I have no animosity, he did what he had to do, and he was not alone.
NON NEGOTIABLE EXTRA #2:You will lose (and may remove) people in your life you were once close to AND you will gain some of the most wonderful, beautiful, much deeper connections with new people.
Some you will meet for the first time through a common experience. Others will become closer as they accept your loss and embrace what will be a different but closer more meaningful relationship.
We choose how we respond in life to every situation, how we react to others and how we tackle challenges. Some days we will respond well, others not so much. Each response and reaction is a choice and builds on the person we are becoming. Things will happen where we are justified in assuming the ‘Victim’ role, but in my experience, this does not benefit us. Ever.
Yes, we are all entitled to have off days, but to perpetuate the ‘Eeyore’ mentality indefinitely is destructive and painful not only to ourselves, but those we come in contact with. It is not our right to share our bad mood, bad attitude or negative headspace with the world. It is our right to share our uncomfortable and heart-breaking moments with those that will encourage and uplift us. Those that can carry us a little way down the path until we can walk a few steps on our own again.
“Every test in our life makes us bitter or better.
Every problem comes to break us or make us.
The choice is ours whether we become the victim or victor”
When you lose a child your perspective on the world changes. Things that once mattered no longer matter. A ‘Victor’ will look around and wonder what they hell people are complaining about. It can be hard to remember it’s all relative. They will search for things that count but cannot be counted – frantic to find stronger connections, increased compassion, deeper love, and directed purpose. They will be driven to find meaning and crave to make a difference.
This drive is not only for their child but in recognition and with gratitude that they are still here and have the chance to make a difference.
This overwhelming feeling or drive is not easy but cannot be ignored and this is where they draw on their room of artillery, of strength, courage, and energy to keep them going.
I will close this week with
8 things that parents who have lost a child, including me, want you to know.
i. I love to hear someone say my kid’s name.
ii. It never gets easier, it gets different – grief has no end.
iii. I am a very different person to who I was before.
iv. I have not forgotten my child died, nothing you say will make it worse.
v. Grief is hidden, sometimes I struggle and break down, no matter how many years it’s been.
vi. Please just listen, I don’t need you to fix it – you can’t! Just be there.
vii. Please take the lead, chances are I will not call you if I need something.
viii. I am surviving every parent’s worst nightmare.
One final note, there IS life after ‘death’ if we believe there is. For us and for them… 😊💙
Dalya xx 💙