The Motherhood of Man

Sculptor, Albert Gyorgy

​If your spouse dies, you’re a widow or widower. If your parents die, you are an orphan. But what do you call a parent whose child dies?
 
The Germans call it Verwaiste Eltern (bereaved parent), and the Ancient Asian Sanskrit word for it is Vilomah, which means ‘against the natural order’.
 
But the fact is, there is no name for it, no one has thought of one, because a single word cannot possibly describe the agonising torture that a parent, especially a mother, goes through when their child dies. No matter how young or old that child is, it is not the natural order of things if your child dies before you, and if it’s sudden and unexpected, it’s not a curve ball that hits you, it’s a gigantic, spiked, burning and terrifying wrecking ball that slams into you, obliterating your senses, and your body.
 
Every part of you, mental and physical, recoils from the shock. You may then also find that your body responds with physical symptoms that mirror the mental anguish. From eczema to indigestion, from heart palpitations that you think could be the start of a heart attack, to feelings of nausea and light-headedness.
 
Then alongside this all-consuming torment you face, is the feeling of complete isolation. You are wrenched from the familiar, the everyday of life, and hurled into a world that is dark, menacing, and frightening, and you are alone.
 
You become a member of the club no one wants to join. The trouble is, you have no idea what the rules are, or how to behave.
 
The Shockwaves
In the first few days and weeks, family and friends rally round. People want to do whatever they can to help; from ready-made meals to cleaning, a listening ear, or a walk in the woods. But it’s after the noise has died down, and the people who had rushed to your aid go back to their own lives, even though your world stopped when your child stopped breathing, for everyone else, the world keeps turning; life goes on.
 
It’s then that you discover how ill-equipped the health service is when it comes to dealing with parental bereavement. The most devastating loss any parent can face, is met with an impossible task of asking and looking for help, at the exact time you are struggling to understand why you should continue to exist at all.
 
It seems, compared with the help that is widely available for parents-to-be at the beginning of a new life, there is scant support for a grieving parent, especially a mother, when their child dies.
 
Life Begins

If you’re thinking of starting a family, you will find a raft of information, from improving your diet and lifestyle, to the best time of the month for conception.
 
With the ever-expanding global datasphere, the mum-to-be will find swathes of online information, all of it available 24/7. On top of that, TV programmes like the BBC documentary ‘Help! We’re having a baby’, and the drama ‘Babies’, add to the plethora of both fact and fiction to fill your waking hours whilst your foetus increases in size and activity.
 
But even before you reach the stage of discovering you are carrying a little miracle in your womb, there’s a catalogue of pre-pregnancy advice. For those with difficulties conceiving, there are diagnostic tests, fertility treatments to help improve ovulation and the sperm count, IVF, egg and sperm donation; the list goes on.
 
You are entitled to a full antenatal service, including a midwife, and after baby arrives, there’s the postnatal care.
 
From the moment you decide you want a baby, throughout the pregnancy, and on into the childhood of your offspring, there is a constant stream of help, support, and advice.
 
Then there is specialist perinatal support for women with complex mental health needs. The following information is taken from the England NHS website.

The NHS ‘Long Term Plan’ builds on the commitments outlined in the Five Year Forward View for Mental Health to transform specialist PMH services across England. The aim was to ensure that by 2023/24, at least 66,000 women with moderate/complex to severe PMH difficulties could access care and support in the community.

As part of the £2.3bn investment in mental health identified in the Long Term Plan, additional investment supported further service developments for perinatal mental health. Set out in detail in the Mental Health Implementation Plan. It includes:

Increasing the availability of specialist PMH community care for women who need ongoing support from 12 months after birth to 24 months
Improving access to evidence-based psychological therapies for women and their partners
Mental health checks for partners of those accessing specialist PMH community services and signposting to support as required.
They also make it easier to access psychological support for those who experience mental health difficulties arising from, or related to, the maternity experience through the development of Maternity Outreach Clinic.
 
​However, if you go to the other end of the scale, when your child dies, especially if they are an older or adult child, and particularly if it is a sudden unexpected death, you are mostly left to your own devices.
 
According to Child Bereavement UK:
“Families of adult children who have died often say that they feel their grief is underestimated … that the death of an adult child is somehow less devastating than the death of a younger child.”
 
The Worst Happens
​
It might be a knock on the door from a police officer, or the unexpected arrival of a family member or close friend. I was at work when I found out, just a couple of weeks into a new job, when I noticed a missed call on my phone.
 
There is nothing that can prepare you for the worst news of your life. Unlike an elderly aunt, or an aging parent, when it comes to your children, it never enters your head that they will die before you. It goes against the natural order of things.
 
But when a police officer asks to speak to you in private, and asks you to sit down, you know something serious has happened. But still, any thoughts of death or dying remain unthinkable.
 
What happened in the first twenty-four hours, and the next few days, is a blur for me. My family were immediately there to support me, and it wasn’t long before the news started to spread. My youngest son had died.
 
The Laura Centre says:
“the loss of an adult child is one of the most complex and painful forms of bereavement a parent can experience”
 
Even now, saying it sounds unreal, I’m not sure I will ever come to terms with it. But what I discovered is that there is no system in place to help a bereaved parent, and what help there is, has to be looked for, and researched. Your mind is so scrambled, completely vacant of rational thoughts and normal processing, but you are expected to answer a questionnaire, the same list of questions that are given to someone who has lost their job, and not their child.
 
Having previously experienced the mental health services offered by my local GP surgery, I knew what the format would be, which is why I didn’t visit the doctor until several days after the incident.
 
There were no surprises; I completed the three-page questionnaire, scoring top marks for the clinically depressed, and was offered a prescription for anti-depressants. The same brand I had been given years earlier when I was going through a tough time, which I now realise, compared with what I’m going through now, was nothing more than a minor blip in my life.
 
I declined them, knowing that not only would they take many weeks to kick in, but there were also the side-effects, and besides, it was like putting a pin-pricked sized plaster on a gaping wound. I needed more substantial and immediate help. They reluctantly prescribed diazepam, a form of Valium, alongside sleeping pills.

The doctor also suggested contacting Steps-to-Well-Being, the regional self-help group, the same group I’d contacted several years earlier for something that now seemed trivial. But it was a box that needed ticking before I could be permitted to seek further help.
 
Meanwhile, I contacted a local parental bereavement group who told me I would have to wait three months before I would be allowed to join the group, in case I ‘triggered’ the other members.
 
One of the organisations I contacted, used an answer phone system, assuring me they would call me back when they could. But as anyone who is in desperate need will tell you, a recorded message asking you to leave your details so they can call you back, is of no use.
 
Four months after the incident, I was passed to another organisation, Dorset Open Door, and once again, I was welcomed with sympathy and words of comfort, and eventually an online meeting.
 
Four weeks later, they suggested I go back to Steps-to-Wellbeing, but they also referred me to another organisation called 2Wish.
 
More form-filling, but just over six months after the incident, I found a bereavement group who helped parents who have lost a child suddenly and unexpectedly, and they didn’t have a ‘waiting period’ before you could join.
 
The person who visited me was very kind, caring and listened to my story, the same story that I have told each person who was meant to help me, a story that now feels like it belongs to someone else. My visitor told me that 2Wish had been set up to help parents who felt adrift when they lost their child. It was the kind of help I was asking for five months earlier, when I was not adrift, I was drowning. They offer you a small parcel of items intended to help you navigate your way through the nightmare, along with some holistic therapies.
 
My Journey
​
How you cope with life after a trauma such as this, is down to your personality and circumstances. There is absolutely no one-size-fits-all.
 
Then there are the feelings and behaviour that some may recognise. Guilt, anger, and denial; you feel like you are going to suffocate from the agonising torture of it all. I shouted and screamed, a lot. I also found a piece of wood and a hammer that I kept in the kitchen; there is now a dinner plate sized hole in the middle of the wood. I do wonder if my screaming and the hammering are the cause of my hearing problems. But that may also be a side effect of the stress.
 
I went back to work after two months, but I also signed up for fundraising events in memory of my son, to raise money for the charity that have supported me throughout. The Royal Marines Association Charity have been a lifeline; they were there for me from the first day, and continue to give me enormous support.
 
Other organisations I contacted, included BRAKE, Cruse and The Compassionate Friends. The help varied, from silent pauses, when I wondered if they were still on the other end of the line, to having a phone conversation in the middle of Costa Coffee shop, where the person asked me if I had suicidal thoughts.
 
I regularly phoned the Samaritans in the first few weeks. They may not have the specialist knowledge I needed, but they were there 24/7, and because I would often be hit with a tsunami of grief late at night, no one else was available.
 
Then there are the many ‘firsts’ you face. The first birthday, Christmas, Mothering Sunday, the list goes on in exactly the same way it did after they were born, but this time, rather than your baby’s first Christmas bib, the only things to mark these occasions, is time passing.
 
I’m told that the first year is the worst, and that you shouldn’t make any big decisions during that time. I’m at the half-way point, and I’m not sure I’m capable of making any decisions, let alone big ones.
 
I don’t know what the answer is, but there needs to be more immediate help offered to a parent that doesn’t involve antidepressants, or having to plough through mountains of information. Perhaps all doctor surgeries should have a checklist, in the same way they do for expectant mums, and instead of a midwife, they could have a compassionate non-medical bereavement specialist, who helps you find the right sort of help. I’ve done a bit of research, and there is something called a ‘death doula’, but they seem to offer help to the terminally ill, and not those faced with the unexpected sudden death of their child.
 
I’m just one mother who has had to face this on her own, but I can’t be the only one.
 
And please, don’t ever say to a grieving parent, that time heals, it doesn’t.

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