The yellow balloon


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. ❤

When Samuel died

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.

https://www.chsw.org.uk

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.

My 5th cancerversary

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.

 

 

 

 

Why I am not as afraid of Covid19 as I probably should be.

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.

Hope when it’s hopeless

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.

 

 

 

 

Waiting

Waiting for a baby to be born is an exciting, knackering and slightly scary time. Waiting for those first contractions is like being in an airport and wondering when your flight will be boarding. You are packed and as ready as you can be, and all that you can do is now is to grab something to eat and try to be patient.
I remember looking forward to meeting my two older children. I knew that labour would be the hardest thing that I had ever done (although the second one was much easier); but imagining holding your beautiful new baby in your arms can get you through many contractions and indignities.
I am also looking forward to meeting my youngest child, Samuel, who will be born soon. I imagine holding him in my arms for the first time. I picture the joy on my first two children’s faces as they meet their baby brother. I will love having photos of us as a family of five together.
But, the truth is that he may never get to meet his siblings and wider family. We have no idea how long he will live. Those first few cuddles as my husband and I hold him for the first time, may also be the last. That first photo of me holding him just after birth, when let’s face it, I will be far from photogenic, may be the only picture that I ever have of us.
I packed my hospital bag for myself and him, but he may never wear some of the nappies and clothes that we bought. I am preparing myself for labour, just as I have done before, but we are having to plan his funeral at the same time. Many people don’t even plan their funeral or think about their death even when they are old and ill. We are planning our son’s funeral even before he has left the womb.
Waiting for Samuel’s birth is like waiting for a flight, but this time it’s not to a destination that you ever wanted to visit. Although things look the same from the outside: I am well, he will look healthy when he is born, it will be a natural birth, we will still get to cuddle our baby; the place that we are travelling to looks dark, feels scary, isn’t normal.
I love Easter, and not just because of the chocolate eggs. Believing that Jesus chose to be born on Earth, with the intention to die as the sacrifice for the sins of all people, is the most important part of the Christian faith. That the son of God wanted to be born as a helpless human baby to then take the sins of all of us upon himself, and die; and therefore to save those who put their faith in him from eternal death, is a truly amazing thing. It’s so unfair and love-filled and seemingly crazy that many people can’t get their heads around it.
By dying on the cross for me and everyone, Jesus has taken away my fear of death, because I know where I am going.
But does that take away death’s sting? No.
Does that mean that I don’t mourn loved ones when they die? No.
Does that mean that seeing Samuel die so young will be easy? Definitely not.
I am confident that we will meet Samuel again one day in Heaven. His heart will be perfect then. But that doesn’t mean that we won’t suffer when he dies; or that we’ll ever ‘get over’ his death.
God gives and he takes away. There will be no crying in Heaven, but there is plenty of it here on Earth.