The Reality of Being A Bereaved Parent
All is quiet in the house today. Well, it is for the moment. The girls are in the garden with a friend, who’s dropped by and hubby is in the front garden running a steam train. The sun is out and the weather is finally a little warmer again.
The house is quiet. There used to be a time when we would have friends over for tea, for parties, to play; and the house, wherever we were living, was alive with laughter, bickering and insults flying, as the children squabbled over dressing up clothes, games and food. I’m a social soul, so I used to love the camaraderie; with any luck at least one extra parent would be on hand to jostle things along or be there to have a cup of tea with me, while the cacophony of excitement continued of an afternoon.
The girls are older now and they are without their brother; a catalyst for fun, arguments and peace-making, so when I am glad of the quiet for writing on occasion, my heart breaks a little more with the permanent state of unease I feel now about a quiet house.
I can hear giggling in the garden and when Ben was with us, I know that all the girls would be chasing him around, with him laughing in high pitched tones to the point of hiccupping! He loved a good game of chase, especially when there were girls involved; and then there was water-ballooning and spraying the hosepipe, or a water gun in the warmth of an early summer evening. It warms my broken heart when I think of those memories and then I ache in the knowledge that those days are forever lost in the bank of my life. I will remember those situations, but my memories will be different from James’ and the girls’ and then who else will remember? We have a close network of a few friends and that’s it outside of family.
We notice that, having come out of the school system before Ben was poorly has meant that he has a few friends who remember him still from his old school, but most of them are from his first school when we were living just outside Winchester.
I find myself looking for Ben in every child I see of a slightly smaller build these days, especially at school pick up time. It’s impossible, but still my heart will leap at the flicking of a head of hair or a particular walk or run or a tone of voice yelled across the car park.
When I looked at his medical notes the other day, I noted that at the age of nine years, he was weighed and it was documented; and he was about 32 kg. Three years later, just before he died, at the age of twelve years old, he weighed exactly the same; 32 kg. He was tiny in comparison to his peers, but was big in personality. This piece of information hits me hard when I think about it, knowing how a child should be growing like a weed at this age and how chemotherapy smashes the system and it’s hard to put into words, without letting my emotions get the better of me; and then the feeling of helplessness and hopelessness starts to seep into my veins.
In recent days, I have continued with and almost finalised a small book of poetry called ‘Sparkles of Light’ which I have put together over the last year or so, to express my feelings around child loss. I hope one day when it’s published, it helps to set someone on a path to healing somehow.
You realise very early on in this exclusive club that no-one really wants to belong to, that you are not alone. You are not alone, because it becomes apparent just how many people cancer seems to reach. It is astonishing. I believe the statistics are now that one in two of us may be subject to a life touched by cancer at some stage now. When I reflect on all that Ben coped with, all that my beautiful girls coped with and still cope with in the aftermath of cancer, it is staggering to know that there are not really any alternative treatments and certainly not kinder alternatives for children. As I understand it, chemotherapy used for treating cancer now in children, is something that has been used for decades treating adults. It needs to change. Now.
I’m certain there are many amazing souls - I have been in contact with some of them in recent weeks - who dedicate their lives to trying to research all the aspects which may relate to childhood cancer and how it may come about in the first place; and what to do about it to create fundamental change.
In my own naïve way, I wish I had a magic wand. I wish that cancer could be cured by non-invasive treatments, by rebalancing the body and by incredible nutrition. The thing is, when your body’s had chemo, as we found with Ben, you’ll eat a) what you can manage and b) what the heck you fancy, thank you very much! Ben’s diet consisted largely of Dominos Pizza and MacDonalds for many weeks, or salt and vinegar crisps, or rocket salad and balsamic vinegar. The chemotherapy went straight for the taste buds and disintegrated anything in his mouth, making it necessary to eat stronger flavours to be able to have a chance of enjoying anything at all at the time.
Over recent weeks, I’ve also had the complete unexpected pleasure of speaking to young person, planning to become a doctor, who wanted to understand from my point of view, how he could best help others, as a medical professional in the toughest of situations. I was overwhelmed at the question, but relished in the opportunity to discuss ways where situations might be more gently handled.
The thing is, when you’re a family going through cancer for the first time, everything is new. Everything is frightening and you are putting your trust in strangers to save your child’s life. It’s as simple as that. The medical terms, the sometimes rushed nature of urgent meetings to decipher the type of cancer, or the best way forward can be at best, confusing and at worst, absolutely devastating.
I tried to express the need for compassion; to imagine that as you are speaking to a new parent who’s child has just been diagnosed with a life-limiting illness, perhaps to slow down and imagine how you might feel if you were talking to one of your own family; a sibling or a parent. Medical teams are there to support you and get you through the experience, as safely and gently as possible, but they have seen this sort of thing (sadly) time and time again. For the newbie, it helps to know that there is someone who has a grasp on how it sounds to hear the words, ‘I’m sorry, but your child has cancer…’ or, the unimaginable line, ‘I’m sorry, none of that is going to happen, because there’s nothing more we can do.’
It actually helped me greatly to get those words out in the open air and thankfully, our conversation inspired this young man to really think about the area he wanted to work in and how he could be a better Doctor in these circumstances. I would love to speak to more trainee doctors and nurses to help them to understand the more holistic side of treating a family going through cancer. At the end of the day, we’re all only human and need to be heard and understood with kindness and compassion.
You realise on this path, that cancer isn’t rare; certainly not in children and losing a child doesn’t always only happen to ‘that family over there.’ It could happen to you, I’m sorry to say.
A few things I’ve learned since being bereaved:
It’s important to slow down.
It’s okay to suddenly step away from something you’re not ready for; a family visit, a coffee, a phone call.
It knocks you sideways and you need to rest and sleep. Sleep is essential, even if you find yourself needing to sleep at different times in the day. Listen to your body and rest, rest, rest.
Crying is good and releasing, even if it’s exhausting.
The loss of a child is NOT the same as the loss of a parent or a pet. Sorry. It just isn’t. Please don’t ever try and compare such a loss with that of a child to a grieving parent.
Every loss is different and unique, so they can’t be compared, but one thing I have found is that if you are aware of another mother who has lost a child, you don’t need to say anything. You already share the most profound and devastating experience known to anyone on the planet and the connection you share is thus unspoken, yet unbreakable.
Children who are bereaved all react differently to the loss of their sibling and there’s no right or wrong way, but they need careful nurturing always, even if they don’t think they do. Keep a close eye.
Hearing the words … ‘At least you still have …’ is unhelpful, or ‘They are in a better place now…’ is unhelpful. Or ‘He’s with God now…’ or ‘God wanted him back…’ These are unhelpful. ‘He was too bright for this world.’ Unhelpful. ‘You’ll see them again.’ Unhelpful and my personal favourite, ‘Everything happens for a reason.’ Hmm. Try spending a moment in my shoes! Unhelpful.
There are times when I really want to look at a family who say that to someone who has lost a child and respond with, ‘Oh, ok. You have …. (pick a number) of children, don’t you? Pick one you can live without for the rest of your life.’ I don’t ever say that, of course, but there have been times I’ve thought about it; and I know if I did, it would render them speechless and wondering which side I got out of bed from that morning! Still, as a bereaved parent, my gut reaction is to remain silent, force a smile and move on.
Since being bereaved, it’s ok to forgive yourself and enjoy the little moments of joy. They are there. It really is ok to laugh out loud.
I’ve actually found writing and speaking about loss really releasing, because I know in my heart that it might help someone; and if it does, maybe that could mean they won’t feel quite so lost one day.
Looking after yourself mentally, emotionally, physically, spiritually (if you wish) is crucial. Walking in the fresh air, running, simple pleasures; eating well, all really good and helpful ways to restore balance and calm in your shocked system.
It’s also really good to talk to people you can trust; a counsellor, a best friend, a parent or family member.
One thing that it’s also ok to acknowledge, is that ultimately those outside close family or other bereaved families, will never really understand the true reality of how you’re managing and that’s alright. They can’t possibly understand if they’ve not walked a mile in your shoes. It’s impossible and is not something I’d wish on anyone. They can still show support by being in the moment with you and talking about your child with you; and listening.
I’ve been crunching some more numbers lately in relation to a couple of fundraising ideas that I’ve had in slow process for a while and I’m going round and round in circles a bit, as it appears that the best way forward really for these projects, will be to create a charity in Ben’s name. I’m still looking into it, but if I’m going to make the leap, something tells me it won’t be far away now, as I have to move these fundraising ideas forward!
It’s good to hear birdsong in the month of May. We are heading rapidly towards the summer and sadly, the summer also means reminders of all we coped with and that in August, it will be two years since Ben died, which seems impossible. As I write this, I can feel Ben’s energy reminding me that summer also reminds him of summer holidays in Cornwall and we had a few over the years. They were so much fun and so carefree. I used to love taking photos of them all as they leapt from the sand dunes and landed on their knees in the sand. There would be countless Crazy Golf competitions in Bude, where the banter would get louder and louder; and then the laughter, as a bird took a poo on my ice cream and glasses afterwards!
This is how you stagger through grief. You cry, you break open, you stand in the pain of it all and then you feel the gentle resignation, the acceptance of all that has happened. You feel the heartache for all that has gone before and will never be again. Then you see the signs, the feathers, the coins, the rainbows. You hear the laughter and somewhere within it, the crackle of electricity, of energy, of love.
You remember the giggles by way of images, feelings, memories and the tears flow. You find moments of joy in the wreckage and moments of light in the altered landscape and you breathe.
Somewhere inside, there is a light that is the reason you are your child’s parent. It’s the reason they love you and will always love you. It’s what somehow keeps you going when you feel that all is lost. Only in time will you realise that all isn’t lost and I don’t say that lightly. I feel like this today, but it doesn’t mean I will feel the same tomorrow.
Today, I enjoy the incredible bond I have with the child I lost to cancer; and feel blessed by the children I have here with me in the physical; and those I am connected to. I know for certain in my heart, that no realm, no world, no Heaven or earth, nothing will ever separate me from my son and I hope that one day, you, too may come to understand this feeling I have. I don’t know if it’s simply a belief, or a hope, but it’s there all the same. Maybe it’s because I know my son and how he would want me to continue.
So, some days, when you find yourself spiralling into hopelessness, just as I do from time to time, I hope you feel the invisible blanket of support around you; holding the space for you and lifting you up again to be able to keep putting one foot in front of the other.
I hope you can recognise that although you may feel alone, there are many (sadly) who walk with you and I hope you can find hope and courage in that knowledge.
Sending love to you all xxx
Crazy Golf, Bude, Cornwall