Rainbow walk for Samuel’s Hospice

I had seen a few adverts for the ‘Rainbow run your own way’, to raise funds for Children’s Hospice South West – the group of hospices that Charlton Farm is part of here in South West England. Charlton Farm is where my son Samuel lived for most of his very short life. It is a wonderful place that cares for children with life-limiting illnesses, and their parents and siblings.

I ignored them at first, telling myself that it was too much effort, and I wouldn’t raise much money anyway… then I saw it advertised again and thought that I could easily walk for 5km, and would rope my kids, parents and in-laws in. I admit that I didn’t feel enthusiastic. I was struggling after Samuel’s second anniversary, and didn’t know if I would be up for any challenges.

To win a medal, you had to raise £15 person that you registered. I thought that I could probably give enough for myself and my two kids to do so. In the end, I signed up 6 of us to our family team.

I set up a Justgiving page, setting my target at £100. That was quite high, but I was trying to be optimistic. I met the £100 target within 24 hours! So I set the new target to £200. The money flooded in. 🙂

Alex Dixon is fundraising for Children’s Hospice South West (justgiving.com)

In the end, I made over £650 including gift aid. And I later found out that I was in JustGiving’s top 20% of fundraisers for the month of June. That’s out of thousands of different Justgiving pages.

I couldn’t believe how generous people are. I am so grateful for everyone who gave – including some people that I don’t know. I guess that it’s personal – people know that my family were helped by the hospice. And I obviously have lovely friends and family.

My team also won the prize for best fancy dress – if you know me well, you will have an idea of how happy that made me.

We did the 5km walk around Stanton Park, which is where Samuel’s memorial tree is. It’s a special place for our family. I thought that a team of 6 was pretty good to do the walk, but people kept asking to join us on the day. We had 23 people and 1 dog on the team. It was fabulous to feel so supported by my family and friends. It was such an enjoyable day, and the weather behaved. Not everyone knew each other before the walk, but they all got on well and it was a great atmosphere.

I am so glad that I decided to sign up for the rainbow run your way. I love Charlton Farm and their amazing staff- and hopefully they will be able to support families like mine for many more years.

May is a difficult month, with it being Samuel’s birthday and anniversary of his death – but this was something positive to focus on.

Thank you everyone who joined in and donated.

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Christmas memory baubles

It was 7 days until Christmas, and Leila was extremely excited. She loved Christmas. She loved the presents, she loved the crafts, but most of all she loved having all of her family together and eating too much.


Leila’s Mummy and Daddy had put up the Christmas tree, and Leila and Mummy were making some more decorations for it. They had already made some paper snowflakes and painted some wooden cutouts of the Nativity scene. Now they were working on baubles. These were no ordinary baubles though: they had little photos of their family members inside them. Mummy was cutting out the photographs and Leila was adding decorations like small sparkly stars and glitter, to make them look snowy. It was quite messy.


“Oops!” Leila cried as a pile of glitter landed on the floor. “Sorry Mummy.”


“Oh dear, not again.” Sighed Mummy, reaching for the dust pan and brush for the third time that morning.


“Glitter is quite messy, isn’t it?” Mummy asked.


“Definitely.” Agreed Leila.


Leila was filling up a bauble with a picture of her Gran and Grandad in it. They had big smiles. She put in extra glitter because she loved them very much.


“Mummy, I wish that Arlo could be with us this Christmas.” She said.


“Me too!” Agreed Mummy, reaching over to give Leila a hug.


“I really miss him.” 


“So do Daddy and I. We think about him every day.” Replied Mummy.


“How old would Arlo be now, of he was still alive?” Asked Leila.


“He would be 2 now. Just imagine, he would be getting his fingers in the glitter, and pulling the baubles off the tree!” Answered Mummy.


“Yeah, I think that he would be very cute, but also a mischief.”


“I think so too.” Agreed Mummy.

“Look, here is a photo of you holding Arlo when he was very little. Shall we make this into a special memory bauble?”


“Yes please. I think that it will be the best bauble ever.” Said Leila.


They had some tiny heart stickers, which Leila added to the outside of the bauble to show that it was an extra special one.


When it was finished, Leila held the bauble in her hand and smiled. 


“It’s beautiful.” Said Mummy.
“Sometimes I feel sad when I think that Arlo is missing out on Christmas.” Admitted Leila.


“Me too darling. But we will always remember him and always love him, won’t we? Do you remember that time that he weed all over Daddy when he changed his nappy?” 


“Oh yes, that was hilarious!” Laughed Leila.


Mummy and Leila hung all of the baubles onto the Christmas tree. They all looked good, but the one of Leila and her little brother was especially lovely. A ray of sunshine came in through the window and made it sparkle.
Mummy and Leila looked at each other and smiled. 


“It’s like he’s saying hello.”

Christmas can be a difficult time for bereaved people. If you have been affected by baby or child loss, here are some places that offer support.

https://www.careforthefamily.org.uk/family-life/bereavement-support

https://www.thegoodgrieftrust.org

https://www.sands.org.uk

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.

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.