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.

 

 

 

 

Week two of Covid 19 lockdown

So how was this past week for you? Can you even remember?

I planned to write one Covid journal entry per week, but, as everything feels like too much work at the moment, and I barely know what month it is, they will probably get more infrequent.

 

This week, my (paid) work stepped up, so I was surprisingly busy. I didn’t mind at all, in fact it felt affirming to be needed. I did spend less time focused on homeschooling; but as my kids’ teachers are so good with sending regular work through, that didn’t really matter.

 

Connor and Bethany still have great attitudes to self-directed learning, but as the isolation weeks drag on, we are all struggling to get up and ready in the morning. Not that it matters.

 

Highlights include the kids spending hours digging and getting a patch of soil ready for planting (they have planted radishes, and I hope to get some dwarf French beans and spinach to grow too); letting the guinea-pigs have a run and as much fresh grass as they can eat; and painting pebbles rainbow colours, to say thank you to NHS and key workers. Mike shaved all of his hair off, to stop having to cut it so often. It’s already growing back.

 

In the news, the PM Boris Johnson is still in hospital with the virus; Matt Hancock threatens us with a ban on any outdoor exercise (please, no!); and the Queen delivers a kind and wise speech, thereby uniting the nation while confusing us all as to why it’s so warm and there aren’t any mince pies.

 

Bethany often sees an old dog on our daily walks: we have done for months (on warm/ dry days), but seeing a regular friendly face outside the home feels special during this current unprecedented national event. The poor old girl always wags her tail and loves our attention (the dog, not Bethany), but most of the time she is too tired to stand and greet us.

 

It is my 5th cancerversary next week, on the 15th. Usually it is a big date in my calendar  but so much has happened in our lives since then, that it doesn’t feel that huge now. Still, it’s important for me to mark the date. My world tilted on its axis when got the diagnosis, and it has never gone back to the way things were beforehand. It’s fabulous that I am here to mark the occasion, but of course there are no guarantees that I will be here for the 10th anniversary.

 

Many people will find that after this virus has finally gone: they won’t be the same as they were. Something has changed forever for all of us now. Many will feel more resilient, many weaker, some broken. Some will want to forget and move swiftly on, others will never forget.

 

I think that the best thing we can do is to be kind: to ourselves and others. If you have an elderly or vulnerable friend or family member, please call or write to them regularly so that they don’t feel forgotten. It’s such a simple thing to do.

 

It’s the Easter holidays now, so there is no whiff of a routine. We will do an Easter egg hunt though. Some things are too important to forget about.

PS: why are people still buying so much flour?

 

Bet with friendly dog

 

 

 

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.

School at home ideas

With all schools closing in the UK from next Monday, I have been thinking  about how best to cope with kids at home, for what could be months.

I am going to try to be organised, and do a mix of activities each day. We’ll see how that goes. By week three, it’ll probably be pjs and popcorn in front of the TV most days. 😐

So, here are some suggestions for myself, and anyone else who may be interested.

Talk

Talk to your children about the coronavirus, they will be worried too. It’s better to chat about what is happening (age appropriate) rather than pretend that everything is ok. They will already know that something is wrong if they go to school and/or you watch the news.

Be honest that sometimes people will get on each other’s nerves. But agree we will all try to be kind and work on our patience too.

 

Structure

Most kids and adults will benefit from some structure in their day. I plan to make sure that we are all out of bed and dressed by a sensible time. Doing a mix of different learning, creativity and getting outside, as well as meals and chilling time of course, will probably work well. A few pj and movie days will be ok though, too.

 

Use school’s resources

Most schools will be sending paper and online resources home with students. Make sure that you make as much use of them as you can. Teachers have worked hard to put them together. If there is an online forum where kids can communicate with their teacher and school friends, even better.

 

Get outside

Until we are banned from stepping outside the door, or public parks close (let’s hope that it doesn’t get to that, but it might), make time to go for a walk, scoot or cycle, every day with your kids. Without exercise and fresh air, most people are going to struggle with their physical and mental health, grown-ups included.

There are also exercises that you can do inside, such as pilates, yoga and stretching. There will be loads of ideas online. I found this one  which looks good, from the NHS:

NHS exercises

Kick the kids out into the garden. If they are old enough, there are many free or cheap tasks that they could get on with unsupervised, if you need to work from home, like:

Weeding.

Make a bug hotel.

Simple Bug Hotel for Kids

Dig a patch of soil and count the number of mini beasts.

List all of the plants, and research their names if you don’t know.

Chalk drawing on paving stones.

Piles of pebbles, Makka Pakka style.

Feed the birds and see who visits.

Draw a plant or item in the garden.

Write a poem about what you can see, hear and smell while sitting outside.

Have a picnic.

Get small pots or a section of the garden for the kids, and plant flowers, fruit and vegetables, and record what does or doesn’t grow.

On rainy days, do puddle jumping, and older children can measure the circumference and diameter of puddles and pebbles.

Measure and record the temperature and rainfall every day.

The RHS website has some great ideas.

 

Write

Short stories; comics; letters to grandparents and friends; a diary (this is a pretty odd time: it will be fascinating to read back on it years later); facts about their favourite animal. All writing is good.

You don’t need to be too worried about grammar and neat handwriting, unless that’s your thing. More important is encouraging children to write and have fun with it. They could tell you about their favourite book, amd them write their own short version, with their friends’ and family’s names and a major change in it. Such as write Little Red Riding Hood from the wolf’s point of view, or where Cinderella accidently gets lost in the forest and meets the wolf too.

Or they could write a mystery story, where their most precious toy gets stolen, and they are the detective.

They could write their favourite jokes, or make up a recipe for the best dessert ever.

If you have two or more kids, they could write and act out a short play. Base it on well loved film or book, if they can’t think of any ideas.

Ask your kids what they would like to learn more about, get them to do some research and write an essay, story or newspaper article about it. Ideas include frogs, the Amazon rainforest, Disney films, castles, anything that your child finds interesting.

British Library has some good writing ideas, such as writing an animal story or making a miniature book.

 

Read

Read with children and encourage them to read every day. It doesn’t have to be fine literature: comic books; books that you think are ‘too young’ or ‘too old’ for them; newspapers and magazines all count. If you can’t do anything else, you can read with your kids before bed every night at the very least.

Have a look at #freebookresources on Twitter.

 

Be creative

You might not  consider yourself to be an artist, but most kids will happily draw, paint or do craft if encouraged to. It doesn’t have to be with expensive supplies either. Use what you have in the house.

– Make a tall tower with only loo roll tubes and sellotape.

– Draw a bunch of fruit, portrait of your brother or your pet.

– Make a comic strip about your friends and family.

– Make cards for friends, to post.

– Scrapbook some photos.

– Let older children take photos on your or their phone or device, and look at them together, discussing which ones were best and why. Is it the subject, light, composition?

– Learn a new skill from Youtube videos.

– Follow artists and illustrators on Twitter, who have regular drawing challenges and art lessons.

Jabberworks

#DrawWithRob and #portraitchallenge on Twitter

are good.

There are some free paper craft ideas and downloads on this blog:

Joolswilson.com

 

Wider learning

Maths can be brought into activities such as baking- get your child to measure and weigh ingredients; set up a pretend shop where your child needs to count and give you the correct change; learn fractions with cakes or pizzas.

Let kids research a subject that interests them. They could do a project, with many activities based around a theme. For example, my daughter has been learning about Poland at school. She could draw maps; learn some of the language; make a traditional meal from the country; write a story set in Poland; look for non-fiction books in the library (while they are still open.)

 

I have found some sites that cover science, maths, quizzes, educational games etc. The BBC has many good resources on their website.

https://www.oxfordowl.co.uk/for-home/kids-activities/fun-maths-games-and-activities/

https://www.bbc.co.uk/bitesize/collections/primary-games/1

The Beano is always fun, and has some educational stuff.

https://www.beano.com/categories/geography-quizzes

 

Let’s be honest, we are all going to go a little mad over the next few months. Try to get everyone to have a little space most days, even if everyone is home. One could go into the garden, one to read in their room, someone else has a soak in the bath. Anything to reduce the stress levels.

Hope that this helps a little, and good luck! 🙂

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.

 

 

 

 

Samuel’s move to the hospice

Our youngest son Samuel was diagnosed with an unfixable congenital heart defect when I was 20 weeks pregnant, in December 2018. He was born on 1 May 2019.

We had a lovely first day with Samuel and some close family and friends. I was still confined to a bed, having had a planned c-section. That night, a fabulous senior nurse offered to hold Samuel for a few hours, after her long shift, so that Mike and I could get some sleep. I wasn’t able to get out of bed yet, so couldn’t pick Samuel up from his cot or change his nappy. Mike and I were staying in a suite that we had to ourselves, with a lounge, kitchenette, double bedroom and en-suite. It is tucked away from the delivery suite, and used for families who have lost their baby during or soon after labour.

After the nurse had gone, Mike had been sitting in the lounge for a while, and was knackered. I said that I could hold him for a while, so that Mike could get some more sleep. I didn’t think that it would be for long, as I couldn’t walk him round the room, make up a bottle, or anything like that. I think it was about 2 hours in the end, that I held him. He was so settled, that although he was awake a lot of that time, he didn’t cry once. He just seemed to peaceful. Anyone who knows me, knows that this would have been a very different experience for me after my two older kids! I never knew that a newborn could be so content.

At about 5:30 that morning, I texted my Mom, who was staying with Dad and my sister Laura a few minutes away. I asked her if she could come round soon to help with Samuel. About half and hour later she was there.

A nurse came to our room soon after breakfast and said that she was going to remove my catheter, and I needed to get up and have a shower. They wanted me to be able to be discharged as soon as possible, so that we could get Samuel to the hospice. We wanted to make some memories with him, without his whole life being lived in a hospital. The average time to stay in hospital is 3-4 days after a cesarian section.

I had a shower and got dressed without any help. I was very proud of myself. It was painful, but managable. I hadn’t realised that my painkillers from the day before hadn’t worn off yet. I was discharged soon after lunch.

Samuel and I were being transported by the ambulance, so we said goodbye to Mike at the ambulance door, and climbed in the back with a paramedic and a nurse from the hospital. Samuel was in a little baby pod, which they use for transporting little ones. He seemed quite happy for his first and last journey by car. We went over the Clifton Suspension Bridge, which gives great views over Bristol. It was the first time on that bridge for both of us. Soon we arrived at Charlton Farm Hospice. Mike was already there.

The hospice is a precious place, set in countryside outside of Bristol, and just what families need who have a child with serious illness or disabilitiy and a short life expectancy. The nurses, (well) sibling team, volunteers, food, bedrooms, garden and communal areas are just amazing. It really was the lovliest place for us as a family to live for Samuel’s short but sweet life. It is a charity, set up by a couple called Eddie and Jill Farwell, who had two children with life-limiting illnesses.

Here is a link if you would like to donate directly to Charlton Farm, in memory of Samuel:

Donate to Charlton Farm Hospice

We unpacked our bags in the family accommodation upstairs; bustled around the huge estate, met some staff and said hello again to others we had already met, and introduced them to Samuel. Connor and Bethany arrived, as well as our parents, and siblings Laura, Phil, Vince and Anna. And then my body decided that enough was enough. I was in so much pain that I could only curl up in a ball in a chair and whimper. It’s a bit of a blur, but the nurses were great and I got painkillers soon enough. My family enjoyed the privilege of changing Samuel’s nappy as a team task.

Our friends Ryo and James visited us that night. We wanted as many people as possible to visit him, so that they would have memories too. Later, Samuel went a little blue and I thought that he was going to go downhill fast. I was relieved that we had been able to spend a day with him at the hospice, but it felt too soon. He started to get better after a while though, thankfully.

That night was hard: Mike, me, Connor and Bethany were sleeping upstairs, while Samuel was in the poorly kids’ accomodation downstairs.

Every ill child has a large room with en-suite bathroom downstairs. The rooms have CCTV, which is monitored by at least two nurses all through the night, in a comfy area called the Meadow. They are on hand to make sure that the children are looked after while their families get some much-needed rest. For many parents of disabled children, the respite care offered by the hospice is more valauble than gold. It’s the only time they get to sleep through the night, have a stress-free meal, and spend quality time with their well children. The parents can watch a movie in the cinema room without constantly worrying about their child. The siblings can have fun going out on day trips or doing art with the sibling team, while the disabled child is cared for. I can see how it must be a precious thing for every family who has a child with a life-limiting condition.

Anyway, the reality of having had major abdominal surgery the day before, and then rushing around all day pretending that it was ‘just a scratch’ hit home that night. Trying to get out of bed to go to the toilet in the middle of the night was agony. I needed Mike to help me, but didn’t want to wake him up. A couple of hours later, I did anyway as I had a panic and needed to see Samuel right away. I wasn’t physically strong enough to walk all the way downstairs by myself, and knew that I would collapse in pain if I did. So I woke Mike up, feeling pretty guilty. We knew that the kids were safe, so we went to  Meadow to visit our baby.

He was happy, with four nurses seeing to his every wish and taking turns to hold and feed him. He was treated like a little prince: everyone wanted a cuddle. I sat with him for a while, gazing at his gorgeous face and watching him practise his facial expressions. He especially liked to pout. A nurse made me a hot chocolate and gave me a biscuit. I felt much better.

20190920_223152

Samuel’s birth

I said that Samuel would be born in May, and I was right.

My induction was scheduled for Monday 29 April in Bristol, but the hospital was too busy that day to fit me in. They called to ask me if I would be happy to get a call sometime overnight to go in. I didn’t want to wait longer than necessary, so I agreed. We thought that it would make more sense to already be in Bristol for if I did get the call at 1am; rather than trying to wake up properly before heading down the motorway.

So Mike and I stayed at a holiday home on Monday night, one that his parents had rented for the week, in order to be close to the hospital when I got the call. My parents were staying in Bristol too, and my sister flew down from Scotland to be near.

We didn’t sleep much that night. Waiting for a life-changing call is not conducive to a good night’s sleep.

Anyway, the place was nice. And we did not get a call in the night. The delivery suite called at 9:00 to ask me to go in to be induced after lunch that day, Tuesday. It was scary, but I was glad to have a time. We had a little walk around and enjoyed a snack at a coffee shop that was too ‘woke’ for us. But the food was good. Later, we had lunch at a lovely pancake/ waffle restaurant near the university.

It was a nice day out with a massive looming event that got closer every minute. Desperate to meet our baby boy that I was, the birth was something that I had been extremely worried about since the formal diagnosis in January.

I just couldn’t picture how I could have a calm natural birth when I knew that Samuel may well die in the first few minutes after birth. Having had two natural labours, I knew that my body could do it. My mind was the problem. If I could have left my brain at the hospital door before going in, I knew that I would probably be fine. But there you go. Brain-removal wasn’t an option.

After lunch, we made our way to the hospital. We sat in a soulless side room for a few hours, waiting for an induction room. This was the low point of the day: a mixture of boredom, discomfort and worry. Finally, a nurse came and spoke to us. She told us that she had arranged for us to go to a suite that is reserved for patients whose babies have died. Although windowless, it was a much nicer place to be. You could make your own drinks or toast in the kitchen, and had a small lounge area as well as a double bedroom and ensuite bathroom.

Samuel had been breech (bum down) the previous week, and had been easily turned. The doctor who turned him said that there was only a 5%  chance of him turning into the breech position again. I remember thinking that he probably would take that 5% and turn it into 100%. So I asked for a scan  before being induced. It is possible to give birth naturally with a breech baby, but there are risks. I couldn’t deal with any more risks.

The doctor brought the scanner to my suite. It confirmed that Samuel was not head-down and ready for birth. He wasn’t breech either; he was transverse, which means that he was lying sideways. Transverse position is dangerous for the baby and the mum, and you can’t have a natural labour because the baby would get stuck and/or suffer from cord prolapse, putting its life and its Mum’s life in danger. I was told that because of the risks, I wouldn’t be able to leave the hospital. Not really what I was hoping for!

I said that my worst fear about giving birth was that I would have an awful long labour, and then Samuel would die before being born. The obstetrician said that her worst fear was that I would have to have an emergency caesarean section involving a general anaesthetic (sometimes these are required), and then if Samuel didn’t live for long, I may sleep through his entire life,  only waking after he had died.

It was then that I realised that having a planned (and therefore calm and non-dramatic and less stressful) c-section was the best option. The doctor agreed, and she said that they would be able to do it first thing the following morning.

I felt peace as soon as the decision was made. I ‘knew’ that it would be a longer recovery for me, but also that a calm swift birth was the best thing for the start to Samuel’s short life. That said, I totally underestimated how painful a recovery from major abdominal surgery would be.

A kind nurse organised for us to sleep in the suite that night, which was a relief as otherwise Mike would have had an uncomfortable night trying to sleep in an armchair next to my bed, in a small sideroom. Usually the suite is only reserved for families post-birth. This was one of many examples of NHS employees going out of their way to get the best possible care for us, above and beyond their job description or pay scale. I hate to think how much all of my and Samuel’s care would have cost in a country like the US, where the medical system  seems to be ‘provide the best for the richest, and everyone else can sod off.’

I went into theatre as planned, at about 9:00 on Wednesday 1 May. The doctor and anaesthetist had already visited to introduce themselves to me, explain the procedure and answer any questions that I had. The room was full of doctors and nurses, and everyone was nice. A screen was placed across my chest to reduce infection risks, and also stop me and Mike from seeing my insides. I think that I would have enjoyed seeing my insides tbh; I find surgery fascinating. I was rolled slightly onto my left side, while on my back, prepped and anesthetised (by spinal block, similar to an epidural). I have since found out that the angle is so that the prolific waters, when the incision is made, flow out onto the less experienced doctor. The lead obstetrician stands on the drier right side of the patient.

I felt calm.

After a few minutes, the lead doctor took Samuel from the warmth and security of my womb into the loud, brightly lit world. The time was 9:59. Samuel was born. He gave a gentle cry.

He was handed to me, to lie across my chest for some skin-to-skin cuddles. I looked down at his squishy little face and smiled. I noticed that he was turning dark purple. Loads of froth started to pour out of his nose and mouth after only a few seconds. I knew then that he may well die, after only a very few minutes of life.

We had been warned by his cardiologist that he may live between a few minutes and a few weeks. There was no way of telling how long we would have with him.

He was whisked away. Our carciac nurse Jess, who has been amazing throughout, from when we first met her after my diagnosis, was in theatre too, at our request. She took some beautiful photos of Samuel being born, from the active side of the screen. She told us that she didn’t think Samuel would live for much longer. I tried to reconcile myself to this, while feeling extremely disappointed that it seemed our baby would never get to meet his brother and sister, this side of Heaven.

Two things that we were desperate to achieve during Samuel’s life was for our older kids to meet him, and for us to have a photograph of us together as a family of five. Other events were important too, like meeting his grandparents and getting to the hospice, but we knew that he may not live long enough to reach these goals.

It took about 10 minutes for the doctors to attempt to revive Samuel. I couldn’t see him, but the room was very quiet. Apparently he changed colour from  purple to blue to white during this time. I think that he was pretty much dead, or very close to it. I knew that he would have a tragically short life; I just wanted a little longer.

He was resuscitated and handed to Mike. He started to cough. This was a good thing, as it cleared his airways and allowed him to breathe more freely. After a while, he was given back to me to cuddle. I kissed him and said

“Hello Samuel, I am your Mummy.”

Soon after the doctors had finished sewing me up, we were taken to the recovery room. When a woman has a caesarean, she is given some time in the room with her baby, away from the busy maternity ward. Usually her partner isn’t allowed in there. This recovery room had space for two patient beds, with a curtain between them for privacy. The second bed had been cleared out, and a comfy sofa put there instead. There were drinks and snacks on hand. A plastic hospital cot sat in the corner, unnecessarily. Our children, Connor and Bethany were sitting on the sofa, waiting to meet their baby brother.

We got our much-wanted photo of our family of five. 🙂

Both sets of grandparents also got to visit and cuddle their youngest grandchild, as well as my sister Laura, who flew down from Scotland to meet her nephew.

We got many photos. The nurses were lovely and made us all teas and coffees. I was stuck in the bed of course, but the painkillers hadn’t worn off yet. We had lots of cuddles. Some friends from church visited. After the initial scare, Samuel was well and happy. It was a wonderful, peaceful day.

That night, after all visitors had left, we returned to our suite. A senior nurse who works in the neonatal ICU at the hospital, offered to come and sit with Samuel for a few hours after her 12 hour shift had finished, so that we could get some sleep. This is what the NHS runs on, the goodwill and kindness of staff who who stay after their shifts finish; who go out of their way to help; who don’t expect any financial benefit in return.

We got a few hours sleep, and my Mom arrived at 6:00 the next morning to help some more.

We were eager to get to Charlton Farm Hospice as soon as possible, so that Samuel’s entire life wouldn’t be in a hospital. We had visited it a couple of times when I was pregnant, and knew that it would be the perfect place for us to live as a family during Samuel’s life. It is an amazing place.

To be discharged from hospital, I had to show that I could get out of my bed, use the toilet and wash and dress myself.

So at about 8:30, a nurse came to encourage me to get up. I managed to shower and dress without any help, and then, feeling pleased with myself, set about busily packing our numerous bags and so on, naively forgetting that I had undergone major surgery only 24 hours before. I was to pay for that later.

Mike’s parents brought Connor and Bethany back for a visit, and Mike’s brother Phil came too. I was given the good news that I was going to be discharged soon after lunch. Soon, after a few more special visitors, Samuel and I headed off to the hospice in an ambulance, while Mike drove himself and met us there. I worried that Samuel would become ill or distressed during the journey, but he was fine in his little baby pod. We drove over the Clifton Suspension Bridge, which I thought was cool. Samuel was unimpressed.

Another big target achieved: we got to Charlton Farm. Samuel was 28 hours old and doing well.Samuel birth day and me

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.