No words that I say
Could ever explain
In any way,
How huge-
How enormous-
How much my love is for you.
That beautiful first day
In May
When we met…
I will never forget
When you looked at me
With dark blue eyes
And cried.
Your clothes are so small
When I look at them now.
How can this be?
When your life was such
A huge part of me.
Your heart was broken,
And so is mine.
I will see you again.
Soon,
My baby boy.
It’s my 9th cancerversary today, 15 April. But I should really call it my 9th primary cancerversary, since I was diagnosed with secondary (terminal) breast cancer last July.
Not a happy event for sure, but I see it as a good milestone. I am still here, so I celebrate that.
I have a cake every year, because cake is good. And I am glad to be alive, especially since my latest diagnosis.
Hopefully, I will get to celebrate my 9th secondary cancerversary one day too, in July 2032.
I am grateful to be alive, and that my children and husband haven’t had to deal with another early death in our family and the never-ending grief from that.
So, am I full of joy and thankfulness, skipping along and singing to the birds? No, not usually. I know that a (hopefully slow) decline awaits me, before a painful death. Although, the thought of being full of morphine and blissfully unaware does help.
What makes it harder is that my local hospice, Prospect Hospice, are really struggling with a lack of funding and donations. Like many hospices, they are fighting to keep going. When the time comes, I don’t want to die in a grim hospital room or at home (my poor family, having to deal with that!) So, I am extremely invested in Prospect Hospice thriving for many more years.
If you have the luxury of a few spare pounds, please do consider donating to them? It can be a one-off or regular donation, or you could enter their monthly lottery.
Many local people already know what a wonderful place it is.
Even though I am fairly well and able now, I have already benefited from their free massages and visits from their social worker. If I needed a spinal operation, even last minute, then they have promised to make a hospital-style bed available for me at home, or I could stay at their beautiful location in Wroughton while I recover.
Palliative care is so important, and means a lot more than dying with dignity and not in pain, although that is obviously vital.
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.
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
Care for the family, who have a bereaved parents’ group, lead by the lovely Mike and Kath, spoke to me about my experience as a pregnant Mum who knew that her baby would die, and grief after your child has died.
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.
Just another blog 