Three Years

It’s not like in the films.

I didn’t fall to my knees screaming. Slide my back down a wall to the floor. Of all the things I remember feeling in my bewildered state, I remember the guilty feeling of relief.

That we had arrived at the destination that we had been trying to fathom for months. So untouchable and yet unavoidable. There was no doubt now, he wasn’t dying, or the hope that actually everyone was wrong and he was going to be okay. He was dead.

We no longer had to worry about his comfort and pain, try and second guess his symptoms. He was, as the saying goes, at peace.

So I’m not sure when I started crying. The nurses cleaned him and put him in fresh pyjamas. And there he still was, gone but not. Still so beautiful.

It’s not like in the films.

He didn’t stop breathing suddenly. He’d been sedated for a few days so we’d become accustomed to the soft, gentle breathing. Over the course of eight hours, he’d pause in his breaths. Skip a few. It sounded deeper, damper. And I’d hold my breath until another of his came. And I wished it over, the waiting.

It’s not like in the films.

There was no montage of the after. No skipping through time. Now it feels like there might have been, as my brain has stitched over the surreality of immediate afterwards.

It’s not like in the films.

I remember laughing in the evening after RD died- a joke with Wolf about something- and immediately wanting to snatch it back because it felt so wrong. We were also trying to make space for the fact we were pregnant. Death and life in one day. Perhaps that bit was like a film.

Today marks three years since RD died. In some kind of space time continuum which feels like it could have been 20 years or 20 minutes ago.

Even if I don’t know what day it is, my mind and body stop at the last bank holiday in August. It’s like wading through treacle. It feels like a pain tears can’t justify. It annoys me, and I can’t push it away. I can’t embrace it either. I just have to succumb to it. I used to feel a version of this all the time in the months after RD died. Now, when it comes, it’s much more acute. More painful but shorter.

Life has continued and brought a lot of joy after the pain. It has tested and strengthened our wedding vows.

So like in real life, and in the films, I return to gratitude. Somewhere, there is a happy ending. Or not an ending, but a happy pit stop. A chance to breathe and take in the views.

To RD, for everything, thankyou x

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Holiday Cheers

There’s a prolonged time after a significant death where you wonder whether you’ll find the same joy in anything, ever, again. Everything feels and tastes bittersweet, a bit off. Or worse, flat and tasteless.

As time and things move forward, life inescapable, joy and happiness start to pierce through. Yet, the guilt of giving into that, takes the shine off those moments. A smile that doesn’t quite reach the eyes, or a laugh from the throat- too loud and sudden- rather than erupting from the belly.

Three years ago, in the midst of our really, really shit year, I booked a holiday for Wolf and I. Just Wolf and I. Call it wilful ignorance, or wild hope. Or just the fact that we needed a break. After two miscarriages, and worsening news with RD’s health, we really, really needed a break.

Four months later, I was begging for refunds from Ryanair and Airbnb, I was asking consultants to write letters to explain that as RD could now die suddenly, we weren’t able to travel. And at no point in the future could we see a time when we’d be able to. I’d felt so embarrassed at my naivety, that life surely was going to be okay and get better.

After RD died, I couldn’t imagine my anxiety easing enough to leave my children ever again. That I’d ever not need to lean my face close to their cherubic sleeping faces and feel the warm, sweet sleep breaths.

Yet here I am, at an airport, just Wolf and I, readying to head home after 4 days in Croatia. I’ve travelled with work since returning, but having shared such a tragedy with my husband, he is my everything on the ground and at home. I know implicitly how the fear never leaves his heart too. For us both to go away, it’s felt monumental.

It’s a significant birthday for Wolf, and marks the end of our decade of being married and starting a family. It deserved something monumental. So on a cold January day I booked this surprise for us- childcare and all- to a place before that decade began we had always talked about going to.

Mostly I forgot about it in the lead up- that’s what domesticity and hectic work schedules do- but in the final week before we flew I swung between excitement and the guttural stirrings of panic. It didn’t help that the day before we left DD was beyond challenging.

In a bid to get her out of the house, and try and placate whatever was making her that way, I asked her if she was worried about us going away. “Yes. Will you come back?” And I remembered that in Disney films, parents frequently go away and don’t come back. I felt her fear, unvoiced properly, but acted out in the turmoil of emotions she was going through that day.

I can’t believe I’m able to say everything went to plan. The sun shone, Dubrovnik showed all sides of its beauty. We drank, held hands, swam in the sea, explored. We laughed from our toes, we had barrages of inane conversation. We spoke openly and honestly about the things we had endured. And how, in spite of how at times we barely clung together, we did. And how, in the dark, we found each other to be our true lights.

We, like so many parents, spent time talking about our children. All of them. How relaxing it was just to care about our own needs and follow our own choices. Yet, how we missed their demands and needs.

The truth is, we wouldn’t have had this holiday had RD not died. Whilst that’s immensely hard to swallow, I can only view it with some gratitude. For if anyone taught us how to breathe in the good moments, and let your senses guide you, it was RD.


I’ve heard it called all sorts, from the U rated ‘betwixtmas’ to the closer to the knuckle ‘festive perineum’ (although I can confirm the perineum is NOWHERE near your knuckle).

For most, the lull after the frenzy of Christmas and before the giddiness of New Year is full of bloat and bewilder. Chain eating cheese with crackers and washing down with a gout inducing array of festive booze. Of finally conceding to eat the strawberry and orange creams out of desperation and boredom.

For me, this year, RD’s memory sparkled in the lead up to Christmas. His spirit felt present in the magic shining in his siblings eyes. He was in the strong smell of pine, the twinkling lights, the sound of sleigh bells. He existed within the happiness and love shared between family and friends.

Not that he and Christmas always had a positive association- for three of his Christmases we spent within the confines of a hospital. There were only two where he could bizz around on his Scooot, but by god they were amazing. He felt involved and connected.

This year marked our third Christmas without him and we had a really good Christmas. It felt fresh and new and full of promise, my sister did a cracking job and it was easy to stay in the moment. Plus DD was so full to the brim with excitement it rubbed off on all of us. Especially BD who ran round in circles excited by something he didn’t understand.

After the last Brussel had been reheated, the carcass of the meat picked over and rustled up into something, I suddenly felt kneecapped by grief. As if I’d fallen off the Christmas cliff. I felt that bone grinding exhaustion take over, my eyes hurt.

The Christmas lights now looked forlorn, and I couldn’t find RD in the wreckage of wrapping paper and pulled crackers. There, in front of me was 2019. And yet again, he wasn’t going to physically move forward with us.

That feels as desperate as it sounds, and for all that we’ve moved forward as a family this year, it can be the sneaky bastard that grounds us. A desperate longing for the past (and naturally a positively edited version of it).

I know from experience that tomorrow will be okay though. A new dawn will still hold the same promise, the love for RD will shine on into our lifetimes. We are here for him, to keep him alive when he can’t be. And that’s pretty motivational.

Say What?

“My son died”

“RD passed away”

And many more similes alongside it. I’m not sure when it happened but at some point my brain cut the link between the words I say and the feeling you would expect them to invoke. An ever so silent Snip Snip.

Now they tumble from me, well trained. I see where they land, piercing the conversation. Sometimes I turn my eyes away from the shock and pain they inflict on others. The minute flickers across the eyes, forehead and mouth as they wonder how to respond. Possibly the eyes turning glassy with tears yet to be spent.

Self preservation took a large pair of scissors and cut the golden threads attaching these words to my heart. Occasionally I feel them prickle as the try to reconnect, only to be stopped short. Not now, not now.

Now is when I’m least expecting it. I can be sat in silence, or in the middle of a conversation. Seated or moving. There isn’t a rhyme or reason and suddenly it’s there. The big, bold fact that actually, my son died. It’s heavy and cumbersome, it can’t be blinked away.

Fact carries some forever truths: he will always be dead. That sounds ridiculous, because of course I know that. Somewhere though, my brain wants to cling to the hope that I will hold him again, see him again. That I won’t just have old photos, memories of a different time and place.

As the two year anniversary looms, I see my current self managing much better on the outside. I feel myself managing a little better on the inside. I seem to question the joy that my current life holds less, control the edges of guilt about that. For if this is a lifetime of living with loss, I don’t want to have wasted any vestiges of joy when they’re there. My two living children in no way replace the space where RD should exist, but they do fill the physical hours of the day with the standard happiness and frustration.

I feel the bouts of sadness and grief as they wash in like the tide in these preceding months, as the long, warm days start to close in, incrementally darker and cooler. With it I sense my anxiety rise up to meet them, a double sense of crazy if you will.

In the middle I acknowledge their weight, and sometimes succumb to them. Try to get to understand them a little more, to embolden me to shout them down. Actually no, I imagine me holding and placating the grief. Feeling my way through my memories of RD in the process, enjoying the pleasure and pain of remembering him and missing him. Find calm by giving it space. With the anxiety- and it will attack whatever it feels like; work, my sense of self, my abilities as a mother, travel- I look at it straight on, and I’m starting to be able to minimise its power.

I often wonder, whilst passing through crowds at train stations and airports, now I’m back at work and have become part of that crowd again, who else in it is battling invisible inner battles of will. Words spent with absolutely no feeling.

“I’m fine”

“Good, thanks”

They’re not lies, but I can’t say they’re truths.

Alternate Reality

Do you ever dream of your Sliding Doors moment? The one where instead of turning right, you go left. Where you chose him, not him. You bought that house, not this house. Took that job, not this job. You let your mind wander down the alleyways of that different life, that ever so slightly different you, wondering if actually, that would be you living your best life?

In so many ways, life right now feels rebooted. Someone has restored the factory settings. And whilst I don’t feel like I’ve lost the last seven years, I’m finding the folder of memories difficult to access. Mostly because so much of this new version feels exactly the same and yet totally different.

I have, a daughter and a son. Two children. At six, nearly seven, months BD is such a replica of RD and the skills that were forever his. I don’t think I noticed that in the same way with DD. The axis where she mirrored all his long fought development, and then forged past it was probably in the foggy early days. The days where we were in and out of hospital. The days that I’m not sure exactly how I, or we, powered through. Although fairly sure I could have been sponsored by Double Deckers.

The other night I was woken up by babbling coming from the boys’ room: the room they have shared but never together. Suddenly I didn’t know when I was waking up: it could be now, or two years ago. The sound, the delicious sound at 3am, could have been either of my boys. At that moment, and in so many moments right now, I yearned for both of them. I wanted to go in and scoop the bald podgy one, and the skinny hairy one and see that both probably weigh the same in my arms right now. To have my hair pulled, and the inside of my mouth probed with little inquisitive fingers from both of them.

It makes the grief feel thick. Like catarrh in your throat. Like someone leaning heavily into your shoulders. I struggle to articulate it in person, the person living this rebooted life. I want to plug into my pot of gratitude, for so many times when things were hard for RD, I yearned for this unfettered life. A life with children who ate, for whom illnesses and sleeplessness were resolved with a cuddle and calpol if the end of the tether was reached. I longed to walk my children to school, kicking leaves and playing games (current favourite being win the race and give a double thumbs up). Nobody questions that my children are thriving, it’s visible in their pink cheeks and bright eyes.

I am who I always looked like. My personality is mostly untouched. Most of the time I am in the moment, I am who you see, I am the words that I speak.

A lot of the time in fact, I feel like an alter ego, an oh so regular vision of motherhood. I fully embrace this new life I’ve been granted, and I let the guilt that comes with that go. Otherwise, new guilt will creep in- guilt that DD and BD’s lives are dictated by the shadow of RD. Especially DD, whose childhood so far has been sandwiched between waiting, being gentle and accepting change before she can understand it.

I don’t say that sometimes my eye sockets ache, that the point where my shoulder blades meet is as taut as a drum. That some days, I’m not sure how I’ve made it out of bed. That I keep doing, keep busy, because the walls I stare at give me no relief.

That in preparing sandwiches for DD’s birthday party, I was frozen by a panic attack. I was trapped with a sharp knife in my hand, scared by my blurred vision and pounding heart. Hearing BD cry to be picked up but unable to move. Knowing fully what I was experiencing but feeling powerless to change it. I wasn’t powerless though, in there, in the wooshing and terrible fear, I remembered to count my breaths. To move slowly. To get to the phone to talk to someone and minimise the surge of anxiety. I do apologise to the child that received the cheeseless sandwich though.

That I sat at DD’s parents evening, scared by the feeling that I was going to burst into tears. That she is doing well, and ultimately we are the people responsible for her, and in part for that doingwelledness, and I looked for the more responsible person than I felt.

Whatever way it is that we’ve turned, the door that we’ve taken instead, sits somewhere between the past and the future and the present.

Through this door, I can fully appreciate the expression ‘a blessing and a curse’.

My Two Boys

This month last year, both of you existed simultaneously. For those couple of weeks we never knew this. Cells were multiplying inside me, imbued by the stardust of last cuddles with your brother.

I keep holding onto this thought. As your sister tells me “we have to use our imagination of our memories” when bringing RD still with us. Keeping him still alive somehow. That you’ll only have our memories of him as yours.

I know that to everyone you look like your sister. You both resemble podgy potato like Mitchell brothers as newborns. Pink and fluffy, with lego hands and pork loin thighs. And whilst you are very much you, I see all of your siblings in you.

Your eyes are the same colour as his, wide and knowing. Your energy is calm, and yet you love moving, being busy, investigating. Just like your brother.

You sit at the top of the centile chart, your brother barely grazed the bottom yet there is a glorious harmony in this juxtaposition.

You’re my first child that I’ve had so much time to gaze at and see, despite the constant demands from your sister for attention. We are free from hospital wards and worry, and for the duration of an episode of My Little Pony I soak you in. Watch the firings of understanding cross your face.

There was so much in a look, a smile, a laugh from your brother. His development stalled, I had nearly six years of trying to understand your brother through this. Now, with you, it feels so precious and familiar.

Wolf said it the other day. After a day on holiday which had been back to back niggly to dos at each other about nothing. That the source of this irritable, want to kick a bloody hay bale pissedoffedness, was feeling your brother so present in you at this stage in your development, in your body, that it made his absence feel so much bigger.

Contract and Expand

“How are you feeling?”

“Okay really”

“No, how are you really feeling?”

I feel there’s watchful eyes all over me. I actually feel reassured by it. I can understand why. I am a woman that insisted that they get my baby out because I couldn’t live with the solitude in the fear of his death any longer. I screamed that he’d died in labour.

But now BD is here, I slowly feel some of the weight of fear melt away. I’m not saying I’m not suffering from some outstanding crazily hormonal moments. I can hear Wolf shouting an AMEN to that. And the recovery from a fast, painful labour and an over production of milk has left me achey and exhausted and thoroughly fed up at times. But. But.

From May last year the testing began to see if I could be the kidney donor to save my son’s life. We knew the potential was there. I held that responsibility, and ultimately I have carried the responsibility that we decided in light of RD’s health to halt the process. I have held on, and held on.

Eight months ago, as one life ended and another was discovered, I have continued to hold on. My body responsible again for keeping another life alive, bearing it to fruition. I could barely scrape at the fear, I just continued to hold on. Another hour, another day, another week.

We have gone from a family of four.

To a family of three.

To a family of three with a dog.

And now again, we are a family of four. With a dog.

Contracted and expanded. But forever changed.

Very kind people tell me I look really well. It took BD and I two hours to get round Marks and Spencer’s the other Tuesday, a fascination with this tiny little soul strapped to my chest. The fact he was five days old. The disbelief I was wearing lipstick. But what I couldn’t say was this: yes I feel okay. Good in fact. Because my labour started the release, and I am still releasing.

Every drop of breastmilk that he takes, I feel the fear let down simultaneously.

I’ve been congratulated on my weight loss. And psychologically, having my own body feel like my own again so soon is healing. Literally a weight lifted. But it is borne from a pregnancy full of so much anxiety I lost weight. Fear has made me thin. So now, as my appetite returns, I enjoy the feeling of pinking up and plumping. A little regained control.

As I contract, I expand with feelings and emotions. When you’re holding on, everything gets held back. I worked. I studied, and completed a diploma. But I knew I was only poking at the heartache for RD. Now, tears are released too. Held back for too long, brushed away too quickly before.

Babies born after loss are referred to as Rainbow Babies. They appear after a storm. And sometimes I am happy to think of BD that way, but it’s more complex than that. RD wasn’t a storm. He was full of colour and life. He IS the orange in the rainbow if you ask DD. BD is a rainbow baby because he is returning some of that colour to us after the grey static of holding on.