Chapter 46: Happy birthday Freddie. Part 2

Despair

Dear Freddie,

Today is your sixth birthday. I can barely breath knowing that you cannot. Some days I can just about tolerate you not being by my side. I can think of your kind eyes and smile to myself. I can speak ‘Freddie’ with familiar fondness, playing your sayings over and over in my head. I can hold memories close to me and feel your love. But most days the weight of my love for you can feel unbearable. It is just so big, so overwhelming, so unbelievably everything and everywhere. I say your name over and over just to hear it, feel how it sounds, call your name, I wish you would answer.

When you were ill I knew what to do. You made me brave and, in turn I made you brave. When our roots upturned and the ground beneath us disappeared, the branches of our trees entwined to give support. You held me and I held you. You, you, you, sweet you. Freddie, Freddie, Freddie. The longing is excruciating.

Then you were gone. You died and part of me died too. My inner Mary Poppins part had to go. The part of me that carried on regardless. The part of me that smiled while inside I was screaming. She was no nonsense, spit spat and off we go. Come along now! No more. She is nonsense and false, she doesn’t belong in the mix with this beautiful, painful love of mine. Now I stop, wallow in the wonder that is you. Freddie, Freddie, Freddie. Such a beautiful sound. I beg, please say his name, it makes me weep, but it also makes my heart sing.

Then I think, god you were good, the best of everything.

You made me better in every way.

Always your mummy Freddie. Love you more than a Rufus pie.

P.S. He is called the Hulk not the Hoke.


Milk

Today I wrote a note to the milkman.

“Thank you for your patience while we get our milk order right. Our son died and it is very hard to work out what we need. Going forward, please can we have……….”

Probably too much information for our milkman. But it dawned on me that our milk consumption habits are a mirror for other areas of our life. Some days you open the fridge and there is great big empty hole where the milk should be. Just nothing. Other days the amount of milk is overwhelming: bottles and bottles of the stuff, spilling out everywhere.

This is how is with grief. It’s exhausting. It’s hard to work to know what you need. It keeps changing. It’s overwhelming, heavy, confusing and never stops. But that’s the thing, you don’t want it stop. You don’t just want to cancel the order. In fact, you need it to stay very, very close. It’s both the thing that makes you feel like you are wading in porridge but the thing that gets you up in the morning. Its love.


Making no sense

And then you were dead??????????

I look at my phone every day, tracing the photos of last year. When you were alive. Looking at the calendar, trying to make sense of how it played out. How could you be here and then gone. One month well, one month tired, one month sick, one month in pain, one month sleeping, one month…… then you were gone. My heart doesn’t understand. My brain does but my heart can’t bear it.

Come back now. I’ve had enough. I can’t be without you for one moment longer.

You were just so excellent

With everything I have, f**K you Cancer.


Broken

Broken, pieces everywhere.

I am a fragmented self, a fragmented mother, a fragmented daughter, a fragmented partner in a fragmented life. Nothing but a fraggle.

Life at fraggle rock sucks.


Running

Running always running. That was you and that was me. Running around and around the block, chasing peace.

Before I was a grazing zebra; greedily chewing, enjoying the sun, sometimes chatting about the lions over the way. I thought I knew stress. Ha!

Then life was nothing but fear; heart pounding, stomach churning, shoulder crushing, heart breaking. Run, Nat, Run! Like the opening credits of Trainspotting, I only stop to laugh manically. Choose a vein, choose a med, choose a massive vat of coffee, choose wine, choose a jumpsuit, choose a massive load of appointment letters, choose life.

The lion came, he ran after me, pounced, let go, played with me, tortured me, then he left my baby dead. My baby died. The lion got my other baby, but he let him go. Where is the lion, where is that bloody lion???? I’ll be ready.

No I’m not. I want to lie down. You can’t run and now I can’t run. I am not ready for anything. I can’t even get the milk order right. All I can do is lie down. You can’t run, neither can I. You are burnt and so am I. You can’t breathe and neither can I. I match you. The pain matches the love.


Scanxiety

Like a pan coming to the boil. It fizzes away. Bubbles slowly coming to a pop around the edges. Pop, pop……….pop. Bubbles making pin pricks in my heart.

He looks fine.

He is just like any other three year old.

I’m not worried.

It couldn’t be.

I would know.

Trust your gut.

My gut says: everything has gone to shit.

Lie down instead.

No, be around people.

People have birthdays and keep living their lives and stupid stuff like that.

All I want to say is: my boy died and now I can’t think about anything because there isn’t space in my head for anything but him.

Stop talking about anything that isn’t him.

But…….Arthur.

Arthur is here, he is real.

But he might leave too. Like Freddie, like Mungo….. like Pixie,

Arthur, I’m doing my very best to be your best mummy.

Sorry the rest of the world, but that is all I can manage.


Repair

Love

Weeping, “I thought we were going again…”

This is what I said to Martin after Arthur’s last scan. We were standing in the corridor of safari outpatients, at the good end. The bad end is where you go to have your hopes crushed and where dreams go to die. Even the toys are all broken.

I didn’t realise how worried we had both been.

In the meeting it felt like everyone was shouting. Arthur certainly was. He really didn’t like being back. He didn’t want to hear about anything medical. After, Martin and I disagreed about things that were said in the consultation. The scan was clear, that’s all that mattered. We all bubbled over and stress was released. Then we hugged, apologised and held on tight.

Love. What you hold onto on a windy day and bask in its sunshine for every other day.


Like Thelma and Louise with less rape and murder

When the multiple cancer bombs dropped I knew I would have to find some gurus to get me through. So, when any modern woman is looking for gurus where does she turn….Netflix of course!

It was here I watched the film ‘Alison’. A film about a mega human, Alison, who survived being raped, disembowelled and an attempted beheading, to go on, have children and inspire others. I know it might not be everyone’s cup of tea. Most people might go for a gentle rom com or action film to take them out of themselves. I just wanted to find people who had lived through bad things happening to them, learn what they did and work out how they survived. I remember clearly, Alison explained that she made a choice to turn and look for the light. She did this again and again; initially to get off the beach where she was left for dead and later, metaphorically to beat the dementors of depression creeping in. I thought if Alison can do that, then so can I.

I have since found many other gurus. Brene Brown for relationships, Dolly Alderton for friendships, Elizabeth Day for actually verbalising what’s in my head and finally Dr Joanne Cacciatore for teaching me about love and grief.

I read Joanne’s book while Freddie was fading away over the last few weeks. Then, after his death, a friend of mine helped me to make contact with her. Joanne Cacciatore is a unique person. She is a bereaved mother, a psychologist, a zen priest and all round awesome human. She lives in Sedona, Arizona. I didn’t know where that was, until Joanne invited me there.

Travelling to Arizona for Selah, a 4 day retreat for the traumatically bereaved, was one of the best things I have ever done. As I said, like Thelma and Louise, except it was just Natalie in a Toyota.

I could say so much about my time there, but there just isn’t the space or the words at the moment. Two things I did bring home were; to first turn my heart inward in grief and start to practice self-compassion and care. The second was, when I am able to, to turn my heart to others, be grateful and use my pain as a bridge to others.

Thank you gurus and especially Dr Jo.


Heart Inwards: A Recipe for self-love

Ingredients:

-3 oversized cardigans (preferably one hoody belonging to you husband)

-a generous dollop of friends willing to drop anything

-a gentle trickle of mum doing little things behind the scenes

-1 trip away for new year

-4 sprinkles of surprise days out

-25ish massages (the exact amount is not important, be liberal)

-7 surprise bunches of flowers on the doorstep

-copious glasses of wine (colour not important)

-85 cups of yoga or Pilates if you prefer

-a massive blob of silly text messages

-a few handfuls of nights out, which you may or may not come to and will probably cry through

-5 really good books

To prepare:

Make sure you wear really nice clothes that make you feel good, put in earrings and honour your loved one by saying their name as you cook.

Method:

-First put some of the ingredients in a bowl. Then change your mind. Take them out and then put them back in again in a different order. It might not feel right, but you’ll get there in the end.

Have a little cup of tea and a sit down.

-Then, gently dribble in some other ingredients you totally forgot about because your brain is like a sieve. Forgive yourself for this immediately.

-After that, make a well and stir in a bunch of warm baths and a heavy dusting of sunshine.

Have a nice lie down with a hot water bottle and an open fire.

-Next, put into a giant hug from your husband for 40 minutes, turn up the heat if required.

Take it out and add in the stuff you forgot.

-Finally, serve in bowl of toddler giggles accompanied by compassion sprinkle with some dark humour.


Heart-outward: Gifts

When I have enough battery stored I try to turn my heart outward. It does help.

I don’t have Freddie and I don’t have much peace in my heart about the people I love (especially Arthur). I know I don’t have control over most things in life, that is an illusion.

But, this is what I do have, which I am grateful for and allows me to turn to the light everyday….

  • My brain. It’s really busy in here. But it works. Freddie’s did not work at the end. I will always be grateful for a brain that works (most of the time).
  • My white, middle-class privilege, I feel quite sick about how little grace I have had about this at times.
  • My parents, in-laws and extended family who love us unconditionally
  • My living child-he is an actual angel.
  • My wonderful husband, I hate the term partner, but he is that in every sense. A partner in crime and in love.
  • My bloody awesome friends. New ones, old ones and ones I have never met. You have saved us.
  • My body. It runs, it jumps, it breaths and it feels. It works.
  • My home with all the painful, wonderful memories inside and all the amazing neighbours holding it up.
  • The little animal visitors, rabbits and red kites in particular.
  • Lovely sunshine when it comes
  • My memories of the four of us together. 2016 was an especially magical year, a blessing I will never forget.
  • All birthdays. They are really hard for me now, but they are to be treasured. Another lovely year being with someone lovely.

As it is Freddie’s birthday today, I hope you can remember him and do a random act of kindness in his name, even if it is small, like smiling at a stranger or making someone a cup of tea.

Freddie, forever 5. But today he would have been 6. We remember you every day.

Chapter 45: Happy birthday Freddie. Part 1

When I was studying French I remembered being surprised at the number of different tenses we had to learn. I’d never really given it much thought before. As far As I’m concerned there was past – stuff that’s happened, present – stuff happening now and future, stuff that was going to happen. Anything else seemed unnecessarily complicated and a waste of brain space. As it turns out, I was barely scratching the surface. There are these weird tenses we use all the time and mostly we don’t even realize we’re doing it. If you’re British you’ve probably said God Save The Queen hundreds of times without even realizing you’re using the formulaic subjunctive. You probably don’t know why you’re using it either. Don’t look at me, I’m more into numbers.

Having a favorite or least favorite tense would be a weird thing, but over the last few months I’ve unknowingly developed a disdain of the perfect continuous conditional. For those not familiar, it’s a tense that refers to the unfulfilled result of the action in the if-clause, and expresses this result as an unfinished or continuous action. No? Well it might be easier if I just use it in a sentence.

Freddie would have been six tomorrow.

In the seven and half months (226 days) since Freddie died, Natalie and I have had to learn to adapt to a life that we never wanted. I’m sure those of you who don’t see us regularly are wondering how are and I’d love to tell you, but if I’m honest I’m not really sure I know! I’m not even sure there’s a word in the English language that accurately describes how I feel. I can go from feeling ok, to feeling utterly heartbroken in seconds. Literally seconds.

There’s no rhyme nor reason sometimes.

Thinking about it, I guess there is a word. It’s just not one we like to talk about. Grief.


I’m not generally a very angry person, but anger is an underlying feeling that I suspect most grieving parents become somewhat acquainted with. It’s not a helpful emotion and I’m not angry towards anyone, but when you lose a child to cancer there are certain things (well one thing in particular) you realize that can’t fail to stir up some resentment in even the calmest of characters.

And that thing is this. We are not doing enough to develop cures for childhood cancers. That fact is abundantly clear to anyone who even cares to scratch the surface. And why aren’t we? Well, people will tell you lots of things but it basically comes down to this.

Not enough children die from cancer to make it profitable enough to develop a cure.

Just read that again and let it sink in.

You probably think that this is just one of those sad realities of life. Depressing, but not especially surprising. So I’ll tell you something that maybe you didn’t know. In 2016-17 Cancer Research UK had an income of £647 million. They spent £474 million on research. Of that, guess what percentage they spent on cancers affecting children and young people. 20%? 30%?

It was 1.4%.

You could argue that children only make up a very small percentage of people who get cancer, and that’s true. So following this logic, children probably don’t appear in their adverts very much right?

Cancer Research use children in 40% of their adverts on TV and in print.

I’m not wanting to sound especially anti the work of one charity. I suspect these facts, or something depressingly similar could be used for many general cancer charities. Surely we can do better than this?


We’ve harped on about Alice’s Arc a fair bit over these blogs. We do that because all their funding goes towards improving outcomes for children and adolescents with rhabdomyosarcoma and naturally, that’s incredibly important to us. I should also point out:

Alice’s Arc has no paid employees and no overheads. Every penny donated will go direct to the charity’s work. So whatever you can give or pledge, you know it will make a difference to a child with cancer.

I think it’s only right you should put a face to the name too. So this is Alice and she’s awesome.

Alice is doing really well at the moment. Her parents had to fund her last treatment themselves which just shows how few options we have available under the NHS. She’s responding well so far and we cross everything that that continues.

My brother in law wanted to do something big to raise some money for Alice’s Arc. So, in August, in memory of Freddie, he has decided to cycle from Lands End to John O’Groats. This is crazy, because (no offense Shane) he looks like this:

As it’s Freddie’s birthday tomorrow (screw the continuous conditional on this occasion) I’d like you to consider making a donation to his fundraising page for him. The link is here.

Click here for Shane’s Lands’ End to John O’Groats page

So happy birthday Freddie. You should be here with us tomorrow, but instead we’ll be at your forest with you, telling you the news, sharing stories, but mostly just wishing things were different and this nightmare never happened.

Lots of love

Martin and Natalie xx

Chapter 44: Freddie’s Day

We took out the Christmas decorations today.  On top was a light up ‘F’ for Freddie.  He wasn’t there today but he continues to light up our every moment.

It’s been a month since Freddie’s day.  A whole month since the most beautiful, orange filled, snow leopard spotted, exploding with love celebration of Freddie’s life.  We opened the invitation wide and you came!  You came with leopard spots on, with bunnies on and with orange blazing.  Thank you doesn’t cover it.  If you weren’t there we missed you and if you were there…….i just hope you managed to get a sausage roll (they were the talk of the town).

As November the 8th dawned, Martin, Arthur and I waited patiently in our finest outfits for Freddie to pick us up.  He arrived, resplendent in his wicker casket, laying on an orange blanket, adorned with wild flowers.  His chariot for the day was Winnie; an awesome grey, split screen VW camper van.

As Martin popped an orange pocket square in his jacket, Arthur and I greeted Freddie with his snow leopard and rabbit friends and tucked them in around him.  We then began our last journey as a family of four; tearing up the roads of South West Hertfordshire, flying through the sunlit, orange tree lined roads to meet our Team Carpenter, ready to celebrate the short but sweetest life of our first born.

That journey was brilliant. Arthur snuggled in, Martin held onto Fred’s basket and I drank in those last bittersweet moments together.  We laughed and we chatted but most of all we felt so proud.  We felt so proud to be Freddie’s parents and so proud to be telling everyone just how excellent he was.  This love and pride for our beautiful boy carried us through the rest of the day, which was both magical and heart wrenching in equal measure.  But the best part has to be that very special journey, our final adventure all together; me and my boys.

Arriving at Greenacres, we were met first by an impressive array of cars.  It was then I realised just how many people had come to show their love and support.  It was overwhelming but completely elevating.  We stepped out of the van to cheers and a sea of faces all willing us on, earnest and kind, where to start?  The children showed us the way, they swarmed in to see Fred in his van, touching and looking, inquisitive and totally at ease.  He was all tucked in, with his friends, with his family, enveloped by a cloud of love. The crowds of people were feasting on orange soup, pesto pasta and hot chocolate, topped off with carrot cake for afters.  I imagined Freddie there with all of us, eating his top favourite foods and darting in and out of the trees and adults like the other children.  Bubbles filled the air and the sun shone down on nearly 400 people, it was truly more then we could have ever hoped for.

Freddie, our guest of honour was carried in first by a team of our nearest and dearest.  Then as the first song “Luckiest” played, the crowds flooded in.  Children on blankets surrounded Fred in his casket, people piled in, filling every nook and spilling out into the courtyard.  Time flashed by and stood still.  Freddie was everywhere but nowhere. We began to speak and tell the world about our Freddie Miles Carpenter-Best One Ever.  I wasn’t present in the room, but Fred was, right there holding our hands.  He told me what to say:


Dear Fred,
To use your words, we are all boiling sad.
Not just me and daddy and Arthur but a huge bunch of people,  some of whom you’ve never even met. We are so sad you’ve gone away but also so sad that more people won’t be able to experience having you in their lives. This is because you were pretty awesome to say the least, as you once introduced yourself, you were Freddie Miles Carpenter, best one ever.
We actually named you Alfred; meaning elf counsel, pertaining to being wise, a sage, emanating old peace. We couldn’t have given you a more apt or appropriate name, as you have been our most intuitive, astute and greatest teacher. In life you guided us and in death you will continue to be our North Star, our mentor, our guru and our exemplar for living.
The first lesson you taught me started very early in your life. This was all about being brave. It’s amazing just how brave you can be when you have a little Pioneer in your belly and you greatest champion willing you on from the side lines. Through your birth you showed me not to fear the pain of the squeezy contractions, but to breath through them. Then to laugh and grow my way through the expansions, not worrying about what might come next or how long it will last. This lesson I will carry with me always through the contractions and expansions of everyday life.
You went on to show me your bravery in everything you did. Although cautious by nature you showed adventurousness rather than recklessness in the way you approached life. You always settled well to new situations and settings, cautiously but courageously giving it everything you had in your own quietly brave way. But then you always had your sidekick and ally, Rufus at your side. Together you could do anything. Freddie and Rufus against the world.
Your bravery reached new heights when you became ill. As daddy says, you gave your illness no respect. Life was too exciting to worry about hospitals, they were just a speck on the landscape of the adventure which was your life. You learnt quickly to get the bad stuff out of the way, leaving more room for endless games of top trumps, yellow car, the animal guessing game and oodles of Rufus stories. As I said, you made us brave. Thank you Fred.
The second lesson you gifted us was love. This shone through in everything you did. You practiced this through your powerful ability to be kind, to share, to make connections and to make people feel special. As a tiny baby, I was blown away by even in the early days, the way in which you communicated love through the way you gazed at me. I remember answering you in the most natural way, “I love you too Fred.”
You continued to be ever so generous in your love, telling us many times a day how much you loved us. In the last weeks of your life, you told us your were the happiest boy in the world because you had me, daddy and Arthur. The last time we spoke of love, we lay in my bed and we drew mazes in the air with our fingers, it was a journey on a map of your love.
The amount of meaningful friendships you had at the age of 5 is a testament to your ability to love Fred. This is because you were so good at sharing. Sharing your games, your ideas, your time and even your ice cream. Whatever you were doing would always be made better if you were doing it with another. Perhaps this was why you included all your teddies in your family, referring to them as your friends. This was why you and Rufus were such a formidable team. This was why you impacted so many, through your gift of making others feel special. Thank you Fred.
Finally, I wanted you to thank you for the adventure we have been on together. Of which, the beginning and ending have mirrored each other more than I could have ever believed.
As you came into the world you started off inside of me, as close as two people can be. Daddy cut your cord and you came to by breast where I fed you. We went to my bed and we held hands and gazed at each other. Endless notes about feeding, left boob, right boob, dirty nappy. First bath in the sink, first bedtime story. People at our house, sending messages, meals on the doorstep, flowers and cards. Then you were on my lap, playing at my feet, running through our house and out the door to nursery and school.
Then at the end, you returned. You could no longer could manage school, you came to the sofa next to me, on my lap and then in my bed. People at our house, sending messages, meals on the doorstep, flowers and cards. Endless notes about meds, this syringe, that syringe, been to the loo. We went to my bed and held hands and I gazed at you. Last story, last breath, last bath, we cut your line. You came back inside of me, to my heart. I will carry you there, although it is heavy, with honour and pride and with bravery and love.
I love you to rabbit world and back Fred.
Always Mummy

Afterwards James read his love letter to boyhood, a poem he had written about playing with Freddie:


I know!
I know! Let’s build a pirate ship! You can be the pirate! Come on! Rufus can sail on it and protect us from the deep sea monsters! We will have to watch out for the squid! Look out here comes an octopus that has really, really huge tentacles! Pkow! Pkow! Pkow!
I know! Let’s make a machine! Let’s give it claws! Really big claws!! And big tyres! Bigger! Even bigger! Bigger still! And a grabber! And a saw! And a hook! And a skid plate! ‘A skid plate?!’ Yeah – you know! A skid plate! Lets build it! Rufus wants to ride it!
I know! Let’s build sandcastles! Let’s build a car in the sand! Let’s make it fast let’s make it slick! Let’s turn it into an Alligator! Let’s get in and cross the galaxy! Rufus knows the way! But we’ll need power, more power, more power and let’s cross that galaxy again! Again? Yes! Again we need to cross the Galaxy again!


Next, Freddie’s head teacher and class teacher reported on his life at school.  We heard about his antics, his chatting, his friends, his love of learning, his kindness, his respectfulness, his humour, his resilience and did I mention his love of talking?  Once again, I felt proud but also happy that Freddie had loved school so much and this had been a little bubble of gorgeous normality for him.

After this, Ali read the book, ‘A Lion Inside’.  This was a special book for Freddie and Martin and in Freddie’s final days he explained that this was a book that he loved to share with his daddy.  Freddie always had a way of making something feel special when you were with him.

Finally, Martin spoke:


I’ve known I’d be making this speech for a long time, but for a long time I’ve gone round and round in circles trying to figure out what best to say.  Over the last few weeks I’ve been repeatedly told, there are no words to describe what’s happened. Which is really useful, when you’re trying to think of some words to describe what’s happened. In the end I thought I’d just tell you a little bit about what I think about when I think of Freddie.
Freddie used to make me laugh a lot. Back in 2016 we went on our first family holiday. Arthur was 6 months old at the time and Freddie was 3. It was our first proper family holiday and, if I’m honest somewhat unrepresentative of holidays to come. We were staying in a five star resort in Mauritius – a place wildly beyond our means. One evening we were eating dinner in the restaurant. Natalie had gone off to the cheese counter and I was left at our table with the boys. The restaurant was very busy, Arthur was throwing food about and Freddie was complaining because he needed the toilet and I’d told him to wait – or words to that effect.
I was cleaning  Arthur’s face when I noticed Freddie had gone very quiet. I looked at him and he was sat still, slightly red faced, looking at me, one hand on the table, the other hand, clutching  his willy, which was on display for all to see as his trousers and pants were now mysteriously on the floor.  I asked him what he was doing, and he told me I’d told him to do it. I looked at him and he said “you told me I couldn’t go to the toilet and just had to hold it, so that’s what I’m doing.”  As I said, he made me laugh. Although not always intentionally.
As you probably know, Freddie loved animals. I feel partly responsible for that. As many of you will know, part of a parents job is to try and force your own interests on your children. So if you know me, you’ll understand why Freddie liked animals.  He had his favourites though. If I asked you Freddie’s favourite animal you’d probably say a snow leopard. With good reason. However that wasn’t actually the case. Earlier this year Freddie sat me down and told me he had something to tell me. He had his serious face on, because, as he told me, I wouldn’t like this news.  After much consideration, Freddie had decided the snow leopard was no longer his favourite animal. The elusive, majestic, ghost of the Himalayas, had been toppled from it’s podium. By the humble rabbit.
Freddie had a spacial relationship with rabbits. The sort of relationship that can best be described by talking a little about Freddie’s third favourite animal. The honey badger. For anyone who doesn’t know, the honey badger, despite it’s relatively small size it is one of the most ferocious animals in Africa. One of our last trips back from Great Ormond Street, Freddie was talking to us about honey badgers. He was explaining how, in Africa they worked with a bird called the honeyguide. The honeyguide would lead the badger to a bee hive and the honey badger would attack the hive. Afterwards both animals would feed on the honey.  This was, Freddie explained, using these exact words, a good example of a symbiotic relationship in the animal kingdom.
It’s embarrassing when you have to google a word your 4 year old uses. Symbiosis, for anyone else who doesn’t know, is a relationship between two or more animals of different species. One animal may benefit greatly from this relationship whilst the other is not helped but equally not harmed by it.  And this brings me back to rabbits. One particular rabbit. A rabbit by the name of Rufus.
Rufus was Freddie’s little cuddly rabbit. Rufus came into our lives when Freddie was just a few months old and in the 5 years that followed, he barely left him. If you see a photo of Freddie, chances are, Rufus is there too.  In Freddie’s mind, Rufus was strong, brave and fearless. He could do anything.  To us he was just the thing we lost 20 times a day. Strangely, Rufus’ life mirrored Freddie’s somewhat. Shortly after Freddie had a tumour removed from his brain, Rufus’ arm fell off. The surgery was less complicated for Rufus, but together, their wore their stitches with pride.
Rufus is with Freddie now. That partnership will live on. A symbiotic relationship in every sense of the word. Knowing exactly where Rufus is brings me a sense of peace. I know Freddie would have wanted Rufus with him and I take some comfort in knowing Freddie isn’t alone.  I’m also extremely happy I’ll never have to turn the house upside down again looking for that little rabbit.
We spent some time picking out the music for today. I wanted to take a couple of moments to explain one of our choices – a song called the luckiest, which played as you came into the room.  That might seem an odd choice under the circumstances, but the more I think about it, the more appropriate it feels.  A couple of months ago, after Freddie’s relapse, when we knew how this journey would end, Freddie was sat at the table at home, and said to me and Natalie “I have the best life. I must be the luckiest boy in the world.”
Under the circumstances, it seemed unlikely. However the more I thought about it, the more I wonder if maybe he had a point.  Statistically of course he was wrong. Freddie was, medically speaking, very unlucky and I’m not taking anything away from that, but happiness isn’t measured by statistics. There’s no getting away from the face Freddie was happy. Almost always and nothing can change that. He loved life. He loved his friends and his family. He loved going to school, he even loved going to hospital, especially if he was having a general anaesthetic.  Freddie manage to extract joy and happiness from everything he did. And when you consider just what he did, that’s quite an achievement. He saw the best in people and made the most of every opportunity that came his way. And if we all did that a little bit more, I suspect the world would be a better place
Ultimately though, I don’t know if lucky is the right word to describe Freddie.
But I do think lucky is probably the most appropriate word to describe anyone who knew Freddie. I asked Natalie a few weeks ago if she could go back in time would she change anything. Without the slightest hesitation, she told me she wouldn’t. And I wouldn’t either.  You’ll have your own memories of Freddie. But when I think of Freddie, I think of a little boy full of life, exploding with happiness. Braver than anyone I’ve ever met, yet overflowing with kindness.  And the fact that little boy was my son, even for just a short time, makes me think I’m the luckiest man in the world.
 Last week I sorted photos of Freddie from his birth until until his death. When put together in chronological order we ended up with a beautiful montage that visually told Freddie’s life story, far more emotionally than I could with words alone. I think sharing that with you seems little a fitting way for me to finish.
So I’ll leave you with this. 100 photos that tell the story of Freddie.  It was an incredible adventure. Thank you for being a part of it.

This was followed by a montage of 100 photos documenting Freddie’s 5 years.  This was something that always reduces me to tears every time I watch it.  I think I have watched it over 50 times, but on this day, I didn’t cry, I just felt lucky. You can rewatch the video by clicking (here) if you like. The password is rufus

Fiona, our lovely celebrant explained to the room about our wishes regarding remembering Freddie. Along with the order of service we had included a postcard to send Arthur to record memories of Freddie.  We also invited people to perform a random act of kindness in Freddie’s name, and included a small business card to leave once you had done this.  We hope that in this way Freddie’s energy continues to be out there, making good things happen, bringing smiles to people’s face and making them feel special.

Our last act was to say good bye to Freddie and we did this by each placing a snow leopard spot on his casket.  Arthur, Martin and I started this process, but this didn’t stop us popping back once again, for one last look.  If it was possible, Freddie looked even more mighty than he had when he arrived, covered in the love of nearly 400 people’s good wishes and love.  The snow leopard reigned mighty that day.

The celebrations continued at Café in the park.  Here, the best sausage rolls ever were converting vegetarians and vegans by the minute.  The gin, wine and beer were flowing and children were being entertained by a magician with a real rabbit (kudos from Fred).  Love, magic, healing, remembering and sadness ran through the room.  I cannot tell you how mind blowing I found the whole event.  It reflected Freddie in every way, and I loved every minute.  I think I am still processing all the faces, messages, people, smiles, hugs, kisses, laughter and love.

Freddie remains at Greenacres, where his ashes will be placed in ‘The Stumpery’, a little haven of beauty within the forest.  Here, he will find his home under a tree with the nest of a Red Kite  (a bird which was part of our daily family conversations), under a carving of a butterfly.  We hope to visit him often.  Although he runs through the fabric of our house, where he was born, where he lived and where he passed.

Freddie Miles Carpenter, truly the best one ever.

Chapter 43: Freddie’s funeral

Freddie’s funeral will take place on Thursday 8th November. The day will be a little untraditional as far as funerals go. We wanted the day to reflect Freddie as best as possible and certain “normal funeral” things just didn’t seem that appropriate. Hopefully the information here will give you everything you need to know, but if we miss anything don’t be afraid to ask. Please read everything, there’s a small request at the end.

Firstly and most importantly, the service is open to everyone. Even if you didn’t know Freddie personally. In fact, even if you’ve never met any of us, but you feel you’ve been on this journey with us, you are welcome. Children are also very welcome. I appreciate this is a personal choice for families and if you feel this might be too much for a little mind to take on then that’s fine. All I’ll say is that I think children surprise us sometimes with their capacity to understand things beyond their years. We will make the day appropriate and dare I say enjoyable for children. It wouldn’t feel right to celebrate Freddie’s life without his friends with us so if you’d like to bring them, that would make us very happy.

There will be two locations for the day. The service it’s self will be held in Beaconsfield at Green Acres. Green Acres link here

Green Acres is 72 acres of mature woodlands with a beautiful woodland hall where we can have the service. There’s also a gathering hall where we’ll serve some refreshments before the service. We like the idea of spending some time together before the service just to remove the difficult nervousness that inevitably comes with funerals. The food will be some of Freddie’s favourites and there will be some tea and coffee.

  • We’d like you to arrive at 12.30pm.
  • We should finish at Green Acres around 3pm.
  • There is plenty of parking.

After Green Acres we’d like to invite you to join us at the Cafe in the Park in Rickmansworth. Cafe in the Park link here

This was one of Freddie’s favourite places and very kindly the team there have agreed to host us all (they don’t normally do that type of thing, so massive thanks to Carly, Tina and the team.) There will be food and drinks (soft, less soft and much less soft!) lots of music and hopefully a few laughs along the way. Anyone who knows the Cafe knows what a lovely place it is. It’s in the middle of the aquadrome so if you want to venture off for a walk, feel free.

  • We will finish at Cafe in the Park around 7pm.
  • You can park at the aquadrome. They will leave the gates to the park open for us.
  • Parking is free and there’s lots of it.

I’ve been trying to think of some of the questions I might ask, so here’s a little Q&A to hopefully cover anything you’re wondering.

Should we bring anything?

No, just yourselves as they say. Any children coming might like to bring a cuddly toy with them as Freddie loved them, and as you know, was never without Rufus.

What should we wear?

Whatever you are most comfortable in. I wont be wearing black, or wearing a suit if that helps! Freddie favourite colour was orange if you want to throw that into the mix! So long as you wear something, you’ll be appropriately dressed!

Will we need a car?

Yes. Green Acres and the Cafe in the Park are about 30 minutes apart. Green Acres is not walking distance from public transport. Cafe in the Park is about a 20 minute walk from Rickmansworth Underground station. If you don’t drive, or know anyone that does, let us know and I’m sure we can put you in contact with someone who can help.

Should we send flowers?

No thanks. If you’d like to do something, we’re asking that donations are sent to Alice’s Arc. (https://www.alicesarc.org/) Alice is a wonderful little girl we met at GOSH whose parents set up this charity. Alice Arc is dedicated to funding research into finding a cure and less harsh treatments for Rhabdomyosarcoma. If you’d like to do something, please support them. If you’d rather not donate online, you can post cheques (payable to Alice’s Arc) to our funeral directors:

James Peddle Ltd

10 Moneyhill Parade

Rickmansworth

Hertfordshire

WD3 7BE

Will there be food?

As above, there will be a light lunch at Green Acres then something more substantial at Cafe in the Park. You wont need any money for anything.

How formal will it be?

It wont be a formal affair in the slightest. If you want to get up mid service and go for a walk, be our guest. We’re not formal people and we’re not going to start now.

Will it be really miserable?

Ok, you’re probably too polite to ask that, but I know I’d be thinking it! It will be much like this blog. We wont shy away from what’s happened, but we’ll approach it just as we’ve approached everything in the last 18 months. It will of course be tough, but there will also be smiles, jokes, laughter and silliness.


And finally, a request….

If you plan on coming, please can you let us know. As we said, everyone is welcome. The selfish Martin wants to pack the place out and give Freddie the send off he deserves! We need a rough idea of numbers for the caterers, so if you’re reading this via Facebook, you can comment there, comment on the blog, text me if you have mine or Natalie’s number. Whatever works for you. If you could let us know by November 2nd that would be lovely. Think of it as your birthday present to me! (But if you were getting me an actually present don’t think of it that way!)

You’ve been with us this far. Hope you can make it for Freddie’s final chapter.

Much love. Martin and Natalie xxx

Chapter 42: Goodbye Freddie

On 3rd of June 2013, just as I was going to bed, Natalie walked in to the bedroom and said the words to me that changed our lives forever

I think my waters have just broken

What followed over the next 20 or so hours was the most beautiful thing I’ve ever witnessed. The woman I loved, giving birth to the most perfect little boy I could have ever wished for. Alfred Miles Carpenter – Freddie as we knew him, was born at home at 7.30pm on June 4th, just as we planned. It was, by all accounts a perfect labour. We were thrilled, excited and in all honesty, nervous as how we’d ever manage to raise a child on our own.

Just over five years later, in that same house, just metres away from where he was born, Freddie decided it was time. 18 months after he was first diagnosed with cancer, his heart beat for the final time and peacefully, he passed away.

By all accounts, Freddie shouldn’t have lasted as long as he did. When we were rushed to Great Ormond Street 5 weeks ago, his MRI showed the tumour was life threatening. It’s size and position meant any continued growth would likely result in his death – and we knew it was growing. His alertness, his playfulness and his continued enjoyment of life went against what the MRI was showing. He should have been sleeping most of the day. He should have been tired and confused. Instead he was building Lego, watching TV and playing with his friends. He was making it very clear this was going to be on his terms, and his terms alone. And we loved him for that.

Over the next couple of weeks, things slowed down. Freddie slept more, spent his days on the sofa and starting behaving more in a way consistent with his illness. For various reasons he was on a permanent pump that administered morphine and ketamine to help with the pain. We were also assigned 24/7 palliative care, meaning a wonderful team of nurses were on the end of the phone day and night. They also visited every day to check on him and his pumps. This level of care happens when a patient is deemed to be 8 days from death. Of course such a specific number is hard to predict, but they have a reasonable idea.

Freddie lived for 6 weeks with this care. We always knew he was a fighter, but this was beyond what anyone expected.

The position of Freddie’s tumour meant as his conditioned worsened, so did his unpredictability. Having anything pushing against your brain is clearly problematic and as he became more poorly, simple things started to become harder. At first it was little things like his memory going or subtle changes to how he’d react to daily events. I don’t think this post is the right place to detail what has happened over the last few weeks, but the Freddie that passed away on Saturday was a very different little boy to the Freddie that went to America 12 months ago. That’s not to say we loved him any less though. We loved him with everything we had and to watch him die in front of us was the hardest thing I think anyone could imagine. Cancer is a cruel, cruel disease and although Freddie tolerated his treatment with bucket loads of strength and bravery, ultimately his little body could only take so much. Natalie and I are so grateful we got extra time with him, but it was incredibly difficult to watch.

Letting Arthur know Freddie had passed away was tough, but Freddie being at home made things easier. We explained what had happened to Arthur, then he brought Freddie some of him favourite teddies. We explained Freddie had left him a goodbye present – a lovely framed drawing of an elephant. Freddie gave Arthur a cuddly elephant when he was born so this seemed appropriate. Arthur now has the drawing, along with a photo of his brother next to his bed. Time will tell just how much he understands, but Freddie will always be part of the family and we’ll talk to Arthur about him every time we can. It’s difficult for Arthur, but so far he seems to be processing it well.

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It’s early to say, but I guess Natalie and I are doing ok. Up and down would be the best description. For every normal moment, there’s a second when you remember something small – like how he told me a couple of weeks ago he was exciting to leave out a mince pie and carrot for Father Christmas – and suddenly the world seems a very unfair place once again.

We just miss him a lot.

We’ve got a few formalities to sort out this week. We’ll let everyone know about service arrangements. A lot of people have joined Freddie on his journey and we’d like everyone to have the opportunity to say goodbye should they wish.

In the meantime, we have a quieter house. One where tears are being shed on an almost continual basis, but equally, one where memories of Freddie are everywhere. We don’t mind that at all, having Freddie as a part of our lives, even for a short period, was the most wonderful gift we could ever have hoped for. And we’re very happy to be reminded of that.

Much love, Martin and Natalie xxx

Chapter 41: The Littlest Soldier

Understandably, the blog is very focused on Freddie at the moment. Anyone who knows us well or speaks to us regularly will be well aware of the situation we find ourselves in right now, and in time, when we have more news to tell, we’ll tell that story. For now, I thought it was about time we told you a little bit about the smallest Carpenter.

Arthur finished his treatment back in January, same as Freddie, meaning he’s 6 months into remission. When Arthur was first diagnosed and we talked about timelines and I remember thinking October 2018 was going to be a big month. As Arthur is so young his options for treatment are limited should he relapse. However those options do increase a little when he’s 3 years old. This month was Arthur’s last scan before his third birthday – and we just found out the scan was clear. No sign of the tumour.

If you listen closely that was the sound of several thousand people breathing a collective sigh of relief!

It’s easy to forget, but Arthur is right now in the most dangerous period, relapse-wise. After a year the odds of relapsing reduce. And then continue to reduce further as time passes. We try not to think too much about the odds, but I’d be lying if I said it hadn’t been weighing on our minds recently. Even if we do have bigger issues in hand.

Arthur is doing brilliantly though. He looks great and his development is broadly where it should be. We’ve resisted getting his hair cut too. I guess we just enjoy the novelty!

The scar is thoroughly hidden too.

Arthur going to have a confusing time ahead. It feels very weird that he won’t remember any of this. He’ll likely never remember those nights in hospital. Won’t remember all the medicines, his Hickman line, being separated from his family for months or the time all his hair fell out.

He also probably won’t remember Freddie.

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October 2018 will be a month that stays with us forever. Not for the reasons I thought 18 months ago, but for something altogether harder. But somewhere behind the tragedy and heartache there’s also a little reminder that one little soldier battles on. And for that we’re eternally grateful.

Lots of love, Martin and Nat x

Chapter 40: Ugly Beautiful

Language is everything. When you first meet a palliative care team the language they use is very careful. There is a shuffling around, an awkward dance of tentative kindnesses. Slowly, with each meeting it gets more real. The language changes. Then people stop talking about ‘the situation’ and ‘Freddie’s condition’, until someone finally says “when Freddie dies……” It hits you like a million lightening strikes. You know what you’ve been talking about, you thought you might have accepted a tiny weeny bit. but it still feels like he who must not be named. No one really wants to say death’s name. Perhaps though, once the elephant in the room is out of its enclosure then you can start to get real. You can enter the ugly beautiful.

I thought I was already there. But it turns out I hadn’t arrived yet. Each day you seem to get a little closer. Each day it gets a little bit harder. The smiles are less, the frustration and pain are more. The person you love gets hi jacked by it’s unwanted hitch hiker. Each day another new medicine, doses creeping up and up. Another attempt to break the pain cycle and chase some peace. Every morning it takes longer to be comfortable and every evening the bed time gets earlier. Each day the irritation is more and the frustrations grow. Tantrums, Meltdowns, self harm and despair. Our heart are breaking and we are all worn.

This is the ugly.

But with the ugly comes the beautiful.

The endless cuddles. The wonderful endless cuddles. Don’t stop.

The meal that is right. The meal that is just what was wanted. Food is one of life’s greatest pleasures. All hail orange soup.

The sharing of colouring. Doing it as a team, together all the way. The pleasure of being in it, just the two of you, colouring against the world.

The kisses. All over my face. On my eye lids. On my nose. On my cheeks. On my lips. On my soul.

The brothers. Looking out for each other. Getting each other’s comforters, offering cuddles and rolling on the floor. It all blows up in two minutes.

The encouragement we give each other. We can do this. Your turn to cry. Your turn to be held. Your turn to be cross. We are together.

The visits in bed. An arm around you. The little boy in your bed with a rabbit called Rufus.

And then there is Arthur.

Our knight in shinning armour. He is the bravest of all 2 year olds. He is waiting patently. He has been through so much himself. Yet no one has mentioned his big days. He needs it shouting from the roof tops. Since January…. he is walking, talking and generally setting the world alight. No more grumpy potato! He moved out and the happy Buddha moved in. He has his Hickman line out back in June and he is loving life.

Thank you darling boy for making us smile when we think are faces are broken. Thank you for hugging Fred when he is so sad. Thank you for eating all our food. Thank you for singing in your cot. Waiting for your turn. You are our light. Just you wait, you will have it all.

Lots of love, Natalie and Martin x