Grief sits heavily on my chest today. I know that she was old and had lived a full life. I didn’t even know her. But. The death of Queen Elizabeth II feels personal to many of us in the UK, and no doubt around the world.
The Queen was the best of Great Britain. The best of all of us. She united us in a way that I doubt anyone will be able to do again.
Her faith was her rock and she pointed us to God during her Christmas speeches. For those of us who are Christians, we take comfort in the fact that she is now in Heaven with her husband, and we will actually get to meet her one day!
As someone who grieves every day for my baby son, this feeling is familiar. It feels like heaviness, like fatigue, like nothing will be the same again. And of course, it won’t. After the death of our monarch, we feel the loss of her wisdom, her ability to unite us and of hope for the future. In this increasingly divided world, the Queen was able to rise above any political divides. I worry about our country, now more than ever.
For those of us who are already grieving a loved one, this time of mourning reminds us of who we have personally lost too. It hurts a little more today.
I think about my son Samuel, who should be 3 now. Who should be starting preschool next year. He wasn’t royal or famous, but he is loved. I wish that everyone could have known him and mourn him too. But Samuel is just as loved, valued and celebrated by God as her Majesty is. Jesus doesn’t care if people were poor or rich, disabled or healthy, old or young. God loves us all the same.
There will be many poor, unknown people who died yesterday. They won’t be on the news or get a funeral procession, but their lives also had value.
I pray that everyone who mourns would know peace and comfort today.
Let’s look after each other. It’s later than we think.
I had seen a few adverts for the ‘Rainbow run your own way’, to raise funds for Children’s Hospice South West – the group of hospices that Charlton Farm is part of here in South West England. Charlton Farm is where my son Samuel lived for most of his very short life. It is a wonderful place that cares for children with life-limiting illnesses, and their parents and siblings.
I ignored them at first, telling myself that it was too much effort, and I wouldn’t raise much money anyway… then I saw it advertised again and thought that I could easily walk for 5km, and would rope my kids, parents and in-laws in. I admit that I didn’t feel enthusiastic. I was struggling after Samuel’s second anniversary, and didn’t know if I would be up for any challenges.
To win a medal, you had to raise £15 person that you registered. I thought that I could probably give enough for myself and my two kids to do so. In the end, I signed up 6 of us to our family team.
I set up a Justgiving page, setting my target at £100. That was quite high, but I was trying to be optimistic. I met the £100 target within 24 hours! So I set the new target to £200. The money flooded in. 🙂
In the end, I made over £650 including gift aid. And I later found out that I was in JustGiving’s top 20% of fundraisers for the month of June. That’s out of thousands of different Justgiving pages.
I couldn’t believe how generous people are. I am so grateful for everyone who gave – including some people that I don’t know. I guess that it’s personal – people know that my family were helped by the hospice. And I obviously have lovely friends and family.
My team also won the prize for best fancy dress – if you know me well, you will have an idea of how happy that made me.
We did the 5km walk around Stanton Park, which is where Samuel’s memorial tree is. It’s a special place for our family. I thought that a team of 6 was pretty good to do the walk, but people kept asking to join us on the day. We had 23 people and 1 dog on the team. It was fabulous to feel so supported by my family and friends. It was such an enjoyable day, and the weather behaved. Not everyone knew each other before the walk, but they all got on well and it was a great atmosphere.
I am so glad that I decided to sign up for the rainbow run your way. I love Charlton Farm and their amazing staff- and hopefully they will be able to support families like mine for many more years.
May is a difficult month, with it being Samuel’s birthday and anniversary of his death – but this was something positive to focus on.
Thank you everyone who joined in and donated.
Grief never goes away,
never gets smaller.
You never get over it.
It’s not a hill.
Your life as one left behind Goes on, yes. Memories are made: New ones without your loved one. Sometimes happy, Sometimes sad, Sometimes nothing.
It’s possible to have good days, Smile, Enjoy coffee. It’s possible to keep going, Be busy, Be sociable.
But grief, The price that we pay for love, Never goes away.
Some people will get it, Without you having to explain, Many will understand Without personal experience. Others will seem to forget, Or expect you to Move on and stop making them uncomfortable. Some will tell you about how hard their petty problems are, And you will try to sympathise, But the reality is that they have no idea.
You will lose some friends Because they can’t deal with your sorrow. You will make some new friends Who love you, scars and all.
We don’t wear all black Or cry every day, But still We grieve.
It was 7 days until Christmas, and Leila was extremely excited. She loved Christmas. She loved the presents, she loved the crafts, but most of all she loved having all of her family together and eating too much.
Leila’s Mummy and Daddy had put up the Christmas tree, and Leila and Mummy were making some more decorations for it. They had already made some paper snowflakes and painted some wooden cutouts of the Nativity scene. Now they were working on baubles. These were no ordinary baubles though: they had little photos of their family members inside them. Mummy was cutting out the photographs and Leila was adding decorations like small sparkly stars and glitter, to make them look snowy. It was quite messy.
“Oops!” Leila cried as a pile of glitter landed on the floor. “Sorry Mummy.”
“Oh dear, not again.” Sighed Mummy, reaching for the dust pan and brush for the third time that morning.
“Glitter is quite messy, isn’t it?” Mummy asked.
“Definitely.” Agreed Leila.
Leila was filling up a bauble with a picture of her Gran and Grandad in it. They had big smiles. She put in extra glitter because she loved them very much.
“Mummy, I wish that Arlo could be with us this Christmas.” She said.
“Me too!” Agreed Mummy, reaching over to give Leila a hug.
“I really miss him.”
“So do Daddy and I. We think about him every day.” Replied Mummy.
“How old would Arlo be now, of he was still alive?” Asked Leila.
“He would be 2 now. Just imagine, he would be getting his fingers in the glitter, and pulling the baubles off the tree!” Answered Mummy.
“Yeah, I think that he would be very cute, but also a mischief.”
“I think so too.” Agreed Mummy.
“Look, here is a photo of you holding Arlo when he was very little. Shall we make this into a special memory bauble?”
“Yes please. I think that it will be the best bauble ever.” Said Leila.
They had some tiny heart stickers, which Leila added to the outside of the bauble to show that it was an extra special one.
When it was finished, Leila held the bauble in her hand and smiled.
“It’s beautiful.” Said Mummy. “Sometimes I feel sad when I think that Arlo is missing out on Christmas.” Admitted Leila.
“Me too darling. But we will always remember him and always love him, won’t we? Do you remember that time that he weed all over Daddy when he changed his nappy?”
“Oh yes, that was hilarious!” Laughed Leila.
Mummy and Leila hung all of the baubles onto the Christmas tree. They all looked good, but the one of Leila and her little brother was especially lovely. A ray of sunshine came in through the window and made it sparkle. Mummy and Leila looked at each other and smiled.
“It’s like he’s saying hello.”
Christmas can be a difficult time for bereaved people. If you have been affected by baby or child loss, here are some places that offer support.
Care for the family, who have a bereaved parents’ group, lead by the lovely Mike and Kath, spoke to me about my experience as a pregnant Mum who knew that her baby would die, and grief after your child has died.
Faith had a yellow balloon. It was her favourite balloon because it was yellow. Everywhere she went, she carried her yellow balloon.
She took it to the shops with Mummy. When she went to Granny and Grandpa, along came her yellow balloon. When she went for a walk with Penny the dog, she carried her yellow balloon. Faith could not remember when she got it, and it felt like she had always had her yellow balloon.
One day, Faith and Daddy took Penny for a walk to the park. Faith brought her yellow balloon of course. It got windier and windier and even windier. Penny ran off after a squirrel, and Daddy chased her. Faith was swept up by a gust of wind, still holding tight to her yellow balloon.
The wind lifted her up, up, up. She floated over Daddy. She swooped over the houses in town.
She soared over the sea. Faith and her yellow balloon flew all the way to the moon! It was beautiful up in space, and the Earth looked tiny.
“Wow! This is the greatest adventure ever, isn’t it, yellow balloon?”
After a while she got scared and wanted to go back home.
The yellow balloon carried her back down to the park safely. When she landed, Daddy was still there with Penny, looking for her.
“Where were you, Faith?” Asked Daddy. “I was looking for you everywhere!” Daddy was upset because he thought that Faith had got lost.
“I was ok Daddy. My yellow balloon flew me all the way to the moon.”
Daddy looked at her and laughed. “Ok darling, but please don’t run away again. I was very worried that you were lost or hurt.”
“Sorry Daddy.” Faith replied.
She took Daddy’s hand and they walked back home. Penny walked beside them, and the yellow balloon was in her other hand. Suddenly another gust of wind swept the string out of Faith’s hand, and before she knew what was happening, the yellow balloon went flying off. She tried to chase after it, but she couldn’t fly. It flew over the road, over the houses and far away.
“No! Come back!” Faith shouted.
But the yellow balloon did not come back. Faith cried and cried. She had never been so sad in her life.
“I want my yellow balloon back!” She cried, all the way home.
“I want my yellow balloon back now!” She sobbed in the back garden while Penny looked at her sadly.
“Why doesn’t my yellow balloon come back?” She asked Mummy at dinner time.
‘I’m so sorry, darling. The balloon has gone away now. We can’t ever get it back again.”
“That’s not fair!” Shouted Faith.
Faith went to bed very sad that night. She missed her yellow balloon. Things did not feel right without it. She was still the same Faith, but just a bit sadder. That night, she could not sleep. It was very late. She looked out of her bedroom window. The moon was big and bright. Then, Faith saw her yellow balloon! It was on the moon. She could just make it out, a tiny yellow dot ever so far away. She had excellent eyesight.
“So that’s where you went.” She whispered into the night sky. “I miss you yellow balloon.”
Faith climbed back into to bed. She knew that her yellow balloon would never come back now. But, she just knew that it was safe, up on the moon. She yawned and fell asleep. In her dream, her visited the moon and her yellow balloon, and that made her feel happy.
The next morning, Faith woke up and looked around her room for her yellow balloon. Then she remembered that it was gone forever. She felt sad all over again.
“I feel sad Mummy, I miss yellow balloon.” She told her mum at breakfast.
“I know Faith I’m sorry. I know what, why don’t I buy you another yellow balloon? Will that help?” Asked Mummy.
“No thanks, I want my yellow balloon, not another one.” Sighed Faith as she ate her toast.
Daddy drank his cup of tea and thought.Penny looked at Faith’s toast and wished that she could have some.
“Why don’t you draw a picture of you holding your yellow balloon?” He asked. “I know that you love drawing.”
Faith chewed her toast and had a drink of orange juice. “Ok Daddy, I will.”
After breakfast, Faith went and sat in the garden with her crayons and some paper. Penny came too, and lay down next to her feet. She drew a picture of her and yellow balloon standing on the moon, because that is where they had their greatest adventure. Penny had a nap and dreamed of squirrels. When she had finished her drawing, Faith showed Mummy and Daddy.
“Oh, that’s beautiful darling, well done.” Smiled Daddy.
“What an artist!” Agreed Mummy. “Would you like to put it up in your room?” “Yes please.” Replied Faith.
So Mummy put the drawing of Faith and her yellow balloon up in her room. Whenever she felt sad, Faith would look at it and remember her greatest adventure with her beautiful yellow balloon.
Dedicated to my niece Lara, who loves yellow balloons.
And my baby son Samuel, who is my little yellow balloon in Heaven. ❤
We knew that Samuel would not live for long. We found out at my ‘normal’ 20 week scan, which happened to be 3 days after Christmas 2018.
We knew that he would never talk, never take his first steps, never start nursery or school.
The cardiologist told us that the average life expectancy for a baby with his congenital heart defect was 2 days. I hoped for a few more, so that he could meet as much family and friends as possible. Of course, any baby can die during labour, so there was that awareness too.
We and other Christians prayed for a miracle, but myself and Mike both felt that he was never destined for a long life. We would have gladly taken it, of course. Why didn’t God heal our Samuel? Only He knows. I do know that Samuel’s life is just as valuable as someone who has lived to 100, or climbed Mount Everest or became a millionaire. Every single person is loved by God, and that is not dependent on their looks, education or achievements. I do know that thousands of innocent babies and children die around the world every day, from disease, war, poverty, illness, accident, unknown causes and parental choice. So he is definitely not the only child currently chilling in Heaven. I miscarried before Bethany was born, so he has an older brother or sister with him.
When I was about 6 weeks pregnant, and then again at 17 weeks (after completely normal 9 and 12 week ultrasounds that didn’t show any problems); I did hear clearly a male voice in my head saying “There is something seriously wrong with your baby.” I hadn’t been thinking or worrying about my pregnancy at the time either. So I had some warning.
Thankfully we were in a lovely hospice for most of Samuel’s life, called Charlton Farm.
We had as peaceful and enjoyable a time with him as we could. And it wasn’t just that Samuel’s every need was met. We were looked after as a family too. They were a real blessing, and we will be forever grateful to them.
I remember the last full day of his life, Saturday 11 May 2019. It was the weekend, so Connor and Bethany were with us again, after a few days at school (staying with Mike’s parents.) Being a Saturday, more family were able to visit, which was great. My sister in law, Mary, came to visit us in the morning. My sister, Laura, who had visited from Scotland ‘for just a few days’, more than 2 weeks before, was living at Charlton Farm with us, mostly to look after me as I had had a c-section and was fairly immobile. She was an absolute angel to us all, and I can’t thank her enough for being there for us. My brother Vince, and his fiance Anna visited us that afternoon. So Samuel was blessed to have all of his aunties around him on his last well day.
We went for a walk up to see the horses on the farm at the top of the steep hill with Mary and Thalia (Samuel’s nurse for the day), that morning. It was a warm sunny day. The kids played on the very posh private school nearby’s outdoor play equipment. We noticed that Samuel was struggling to poo, which is a sigh that we had been warned about. It was because his heart was failing, and the digestive system is the first thing that struggles to work due to reduced oxygen. He could still breathe fine on his own and wasn’t in any pain.
That afternoon, Vince and Anna arrived. We had a lovely time sitting in the garden while Samuel slept in his pushchair or was held by everyone in turn, and Bethany played in the nearby sandpit. Everything felt so relaxed and happy. I thought at the time that this was going to be a happy memory to cherish. You don’t always know what you will remember, but I just knew this time. Samuel was ok, if sleepy and not hungry. The exact opposite of his brother at that age!
We knew that his time was probably coming to an end, but didn’t know how long it would take. And there is always hope that you will be given a few more hours and days.
That evening as Mike and I watched a film, strangely I can’t remember what it was, we could see that Samuel was starting to physically deteriorate. He was still comfortable and didn’t need any interventions, but one of the hospice’s regular doctors made the effort to came to check on him anyway at about 11pm, long after she had gone home for the day. A trick of his was to creak at you almost like he was trying to communicate. He was also a surprisingly alert baby who stared at people as though working you out. He got more creaky and more pale. We felt calm, but there was sadness as we knew that we would have to face his death soon.
We told the two nurses on night duty to wake us up if there was any concern about his health. I was downstairs in his room, as the trip to the bedrooms upstairs was too tiring and I wanted to be near to Samuel at night. My sister was in the next bedroom. At about 2am, nurse Sophie woke me up to say that they had tried a little medicine, but he was quite poorly. I had a cuddle, and after a while he picked up a bit. About an hour later, they asked if they should wake Mike and the kids, as Samuel was struggling. I agreed, and soon Mike, Connor, Bethany and Laura came into the room. He was very pale and we told the kids that he was going to die soon. The nurses had given him some medication to make him more comfortable. We had some cuddles, and all said goodbye to him. He was in my arms as I sat in bed when he died. It was all so calm and quiet. I think that he had the best death that anyone could hope for.
At about 4am, we had said our goodbyes and the nurses made us all a hot chocolate while we sat in the nurses’ station where Samuel had spent many nights in a nurse’s or my arms. There are sofas and a big window. We watched the sun come up.
Samuel had a happy life and a peaceful death. He was hardly ever in a cot or pushchair as everyone fought over cuddling him. He made such a big impact on our and many other people’s lives in his 11 days on Earth.
We are sad, and sometimes angry; and it is incredibly unfair. We will never stop grieving our son. But what happy memories we have with him. He has helped me to think about life differently: about what is really important.
The 5th cancerversary is a big milestone for survivors. And 5 is a big number, definitely. Sadly it doesn’t mean that it will never come back. Cancer can hide in your cells, even spread to many parts of your body, even decades after treatment for the primary cancer has finished. But, of course I am grateful to be well now, and happy to have been around for those extra years with my family.
This year, the whole world decided to join in with the chemo feelings of social isolation; loneliness; possible loss of income or job; fear of being really sick and dying; lack of control; and general inconvenience. Doesn’t feel great does it?
Strangely, this isolation caused by covid 19 has helped me to feel less isolated. Because we are all in this situation together, my family has not been singled out for a change. That feels much more manageable. We’ve got it a lot easier in fact, than many people do. We are not NHS or key workers. All we have to do is stay home. Thankfully, so far none of my friends or family has caught the virus.
When I received the unexpected shielding letter from my hospital last week, I was not as relaxed about it. I have had a few random health problems over the last few years, including an awful cough and breathing problems caused by a chest infection that didn’t heal for 6 months. But I suppose that it’s the chemo that got me on the list.
So, once again, the shadow of cancer hangs over me, meaning that I am again seen as a vulnerable person. I have been put into the ‘poorly person’ box again, and I don’t like it at all. I think that the biggest problem is one of identity. I am Alex. I am not a cancer victim. I am not my illness. I needed to remind myself that the letter doesn’t change this. They are, in fact, looking out for me. That’s a good thing, that the NHS cares about little old me.
The other issue is one of control. I have been in uncontrollable situations many times, so have learned this lesson before. But I guess it’s a lesson that needs to be learned again. Strangely, there is so much strength from admitting weakness, by realising that there are very few situations where you are actually fully in control. Nobody is always strong.
That’s the advantage of having faith in a God so much stronger and wiser than me. I don’t need to pretend to myself and others that I am god of my own life. Because I’m not. I didn’t choose when or how I was born, and I won’t choose when or how I die. I have found a peace in that.
For now, I am enjoying my lovely house; garden full of new life; and family who I get to spend more time with.
I will never be grateful that I had cancer, but I am here, I got through it. And if that isn’t a good reason to eat chocolate cake, I don’t know what is.
Everyone is understandably feeling anxious right now. This is a world pandemic. Many people are ill and have died. Many more fall ill and die. It’s a scary time.
I want to say thank you to every NHS and front line worker. Thank you so much for all that you do for us.
I can’t imagine how hard this is for you.
But I look at the levels of panic, and honestly, I just don’t feel it. Is there something wrong with me?
I do worry for elderly and vulnerable family and friends, so I know that I am not heartless. I understand why people are afraid, but I don’t understand why I am not. This all feels so distant from me: I know that it’s serious, I follow all Govt rules in staying at home, social distancing and hand washing. I know that it’s real. But I just don’t feel afraid. I know that I might get ill: in fact I am at higher risk than many people of my age, so I definitely do not feel immune.
And yet. I have done social isolation, not being able to go I to work, and facing my own mortality, thanks to cancer. I am used to fear, sickness, reduced income (my husband is self-employed), and not seeing friends. I have faced the death of a loved one: my son died in my arms last year, due to a congenital heart defect.
What I am not used to is other people being in the same boat as me and my family. I am used to other people’s lives being busy and happy and successful while we get left in the dust. So, I quite like that we’re not alone in this latest disaster. It feels like we are all one family now, looking out for each other. Sharing home schooling and exercise from home tips. Volunteering to help others, and being kind. Talking about our fears, rather than having to pretend that everything is ok because other people can’t handle our pain. Because everyone is in pain, it feels a lot less lonely.
I feel grateful for the little things: sitting in the sunshine in my garden; spending days learning, baking, playing and being creative with my kids; being grateful when there is milk in the shop. Others must be feeling this too?
A couple of months ago, I remember wishing that life could just be put on pause for a while. I was too busy and too tired. I needed a break, but couldn’t see how I would get one. Even in holidays, I rush around, planning trips and visits without taking much time to rest, or just enjoy my family and home. Now I can do that.
My cancerversary is coming up in April, and my son Samuel’s birthday and anniversary of his death in May. I won’t have to keep going during these, powering on through, because the world has crashed. My family’s lives crashed last May when Samuel died. It feels nice that we aren’t so alone now. It’s ironic that when we are most physically alone, I feel the least lonely.
Please forgive me if I sound unsympathetic. I do know how awful and unfair this virus is, especially for the vulnerable and the poor. I wouldn’t wish it on anyone. I stand with those who mourn.
But is this really the first time that some people have realised that they are mortal? We are all going to die. It’s no use pretending otherwise. Maybe you should think about what you believe in what happens to you after death now, rather than pushing your fear of death to the back of your mind. Write a will if you don’t have one. Stop living like your time isn’t the most precious thing.
Yes, this virus is unfair, but then so is life. Time to face up to that. Take the time to play with your kids; read a book and look at the flowers in the garden. Message your friends to check in on them. Volunteer if you can.
Soon crazy busy normal life will return, but hopefully we will be kinder for this shared disaster.
I am going to come right out with it, something that’s been bothering me for a while: Christians are not always that helpful. Christians are not always great when you are having a terrible time. Sometimes they say stupid, ignorant things. Sometimes they ignore you because that’s easier for them. Sometimes they throw inappropriate and out-of-context Bible passages at you like so many bricks, then walk away smugly, thinking that they have helped, when in fact all they do is make you want to stop going to church, simply to avoid people like them.
Yes, it’s harsh but it’s true. Thank goodness that I put my hope in Christ, and not people. That’s the problem with putting all of your faith in someone human, no matter how much they love you, one day they are going to let you down.
Before I get lots of defensive replies, let me also add that sometimes Christians are literally a God-send. Sometimes they are the perfect friend at the right time, and even though they don’t know what to say; even though they may have never been through trauma, they are still kind. They still give you a little bit of joy or peace.
And, of course, non-Christian friends are wonderful too. If you haven’t got any friends who are not believers, you are missing out. People don’t need to have faith to be kind, honest or generous.
I am in the club with the most expensive membership fee, the club that nobody wants to join: people whose child has died.
Meeting other people who have lost a child can be helpful, tiring and sometimes really sad. I found myself recently in a bereaved parents’ group, and honestly I felt so sad for them. A bit sad for myself certainly, but mostly for them. I was thinking about why I felt this way, amd I think that it’s because even in the most hopeless of circumstances, I have hope.
People who don’t believe in God think that they will never see their child again. If you haven’t had a child die, you have no idea what this is like, but try to imagine it for a second. Most people won’t, because our brains try to protect us from harm. And the death of a beloved child is the most harmful thing that our bodies, minds and spirits will ever have to face. I have had life-threatening cancer at a fairly young age, and I can confirm that this is a walk in the park compared with holding your baby as he breathes his last.
The thought of never seeing your beautiful child ever again for me is the definition of hopelessness. It is sadness, dismay, emptiness, fear and pretty much all of the bad things, rolled into one.
But I do believe that I will see my Samuel again. I did not want him to be ill, I did not want him to die. I get cross with God for putting us through this. It is completely unfair. Please do not tell me that this will work together for our good. But I do know, as much as I know anything, that one day I will see him in Heaven. I will hug him, I will be overjoyed. I have to, probably, want a long time for this meeting. But I look forward to it.
I have hope in the hopless situation, because I know God.
If I did not believe that God loves me and gave up his only son to die on the cross for me, and that he is looking after Samuel for me, I would be inconsolable. I would fall into the depths of despair. Nobody’s kind words or saying that he is a star or a butterfly or an angel now, would help. Superstition and traditions ring hollow. The only person that I put all of my hope into is Jesus. The only thing that shouts truth to me, is what is written in the Bible.
I have faced my own mortality head-on, and it does not scare me. I know where I am going. I know where my baby is. No popular culture or secular academic argument will ever sway me. I must either be completely deluded, or right.
How do I have hope? Even though I am traumatised, harrassed, been physically and mentally ill, grieving, incredibly sad and sometimes very angry? Because I know that God loves me. I don’t know why life has to be so flipping hard, but I know that he will never let me down.