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.

The beach ball

The rainbow striped beach ball,

Suddenly free from the

Dusty garage, is kicked

Playfully by the breeze.
Round the garden he rolls.
Tumbling over the lawn,
Kissing the daffodils,
Bumping over decking.
Smiling at the sun.
But he misses the child.
He remembers how they
Played, last year at the beach.
The child and he.
“Where is the child?” He asks.
“Inside, watching TV.”
Replies his friend the breeze.
“Ok  I will wait for her here.”
“You don’t need her.” Says breeze.
“But I like her.” He smiles.
The breeze sends him soaring
Into a tree. He falls
Out, bouncing merrily.
“I am ready for the child.
Whenever she needs me.”
Ball and breeze for poem drawing

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

 

 

 

Covid19 diary week 1: 22-29 March

I first heard of the latest coronavirus in late December: it was far away in China then. Since named Covid 19, it is now the subject of 90% of all conversations, and traditional and social media outlets.

I decided to keep an online journal, so that I can look back on this ‘unprecedented’ time in a few years. If the zombie apocalypse hasn’t hit by then, of course. I cannot promise to make it interesting, but it will be honest.

The govt shut down schools (except for children who are at risk, disabled, or have parents who are key workers) on Friday 20 March. So for most parents in the UK, the 20th was the last normal day is what could be a long time.

Dropping my daughter Bethany off at school that morning, it all felt so normal. Only one child was crying, and everyone else seemed pretty calm.

I went into work that day, (I work in a college), also for the last time in a while, and besides it being very busy, it also felt normal. Although there was an odd feeling in the air, a sense of being on the edge of an invisible cliff.

That Friday night, I started thinking about how the following week would look for us as a family. Although we don’t have to homeschool, sitting the kids in front of the TV for 8 hours a day seems a little lax, so I made a list, and blogged about it, of things to do with kids when at home. We have already done some of those things, so it wasn’t a waste of time.

School at home ideas

It turns out that I didn’t really need to plan home schooling, as my kids’ schools both send work through online every morning. It only takes a couple of hours to complete, but combined with home learning stuff, I reckon that’s plenty. I had ordered text books for Maths and English online for both Connor and Bethany the previous week, so they do a little of that most days too. Also, Bethany has chosen to do a self-directed project on amphibians, salamanders specifically. So we have some books, and I have found online resources about that too.

Anyway, we have a rough plan every day, that gets written up on Bethany’s blackboard; of registration, English, break, PE, maths, lunch, playing/ garden/project/ art or baking. We don’t always follow the plan, and sometimes leave out PE (although we do go for a long walk/ scoot every day, which is PE I guess.)

Sometimes we video call friends or family. I am aware how difficult this is going to be for younger kids, who can’t just text or Watsapp their friends  like my son does. I think that when life goes back to normal one day, many of us will have forgotten how to do small talk. Hopefully, it won’t make us all even more self obsessed too. It doesn’t look that way, if the NHS volunteers and kindness that I see on social media is anything to go by.

Anyway, thankfully my kids have a good attitude to learning, and just get on with it every morning, without having to be asked. I do keep checking in, but it’s proving to be much easier than expected so far.

I have some work to do too; as well as never ending housework and keeping in touch with some elderly and vulnerable people that I am looking out for. I am also focussing on my mental health, by walking, exercising at home, getting into to the garden when it’s sunny, reading books, and art.

To be honest, at the moment it feels more like a strange holiday than anything that is particularly dangerous. That said, we are all following government advice, not doing any food shopping except when necessary, and only going out once per day. Plus the ubiquitous hand-washing.

I went for a long walk today, and it was so quiet. The sun was shining and the birds sounded  very pleased with themselves. I expect that the levels of air pollution have dropped so quickly, that this year nature is going to amaze us. It’s good that the plants and animals are going to get a much-needed respite from some of the human destruction. It’s like the Earth is telling us to slow down.

Most people are being more sociable now that they are less busy and not seeing nearly as many people. Dog walkers are generally the friendliest (and I already recognise a few of them from my regular walks and chats about their pets: I love dogs); but young and older people are saying hello as we walk past each other, much more than usual. Connor has asked a couple of times whether I know this or that person, but no, I don’t know most of them. We do always keep 2 metres away, I hasten to add, before anyone criticises me.

It is sad to see the playgrounds taped off with warning signs, but we wouldn’t be using them now anyway. It’s just sad.

I didn’t know that I could ramble so much…

Monday: speech marks, maths with Connor, #DrawwithRob

Draw with Rob Biddulph

Tuesday: Joe Wicks PE, baking cookies and nerf fight.

Wednesday: signs of spring and spring craft, also clothes in the apple tree.

Thursday: scoot in the Park, NHS rainbow drawings in window, clap for the NHS at 8pm with people around the UK.

Clap for the NHS

Friday: set up the piano, minibeast count in garden, sing to Nanny.

Saturday: guinea-pigs play in their new run in the garden. Blisters from too much walking. Monopoly.

Sunday (today): write to Grandma and friend, online church x 2, chilling.

I saw some friends while out today: we had a nice shouted conversation to each other from across the road. They have a dog. I wish I had a dog now, more than ever. The guinea-pigs are lovely, but it’s not the same.

Boris went down with a mild form of covid 19 this week. It’s no surprise, but it does show that nobody is immune. The deputy chief medical officer today announced that we might be in lockdown for the next 6 months! The mind boggles. It’s so hard to imagine living life this for half a year. But it doesn’t scare me. It’s just so surreal. My husband Mike says that this is probably all a dream of his. I don’t believe so. If it is  he had better wake up quickly.

BBC news

Have you noticed that when you watch TV or read a book, when they talk about hugging or going out for a meal, you tsk at them and feel morally superior? Maybe it’s just me. It’s quite incredible how quickly our minds can adjust to massive changes. Makes you wonder what other social rules we have grown up with and therefore see as normal, that other cultures would find offensive.

I am tired of thinking now. Goodnight.

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! 🙂

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