An Open Letter to Samantha Cameron

“But we both know now that terrible things can happen in your life and you will come through them and survive”*

*Times Magazine, 18th February 2017

Dear Sam,

I honestly don’t know if that’s what you prefer to go by, and apologise if it seems either a) condescending or b) over familiar, for that is not my intent. I’ve just sat and read your article for The Times Magazine, and I suppose this is fan mail of sorts. I just wanted to find a space to let you know that I’ve admired you for a long time, and whilst I can predict and see on social media a surge of criticism and scorn for your words, I for one want to stand by you. Offer you my thanks for all you have represented and continue to represent. And I think going by Sam suits you- you refer to your husband as Dave, and surely you two have had a giggle about being Sam and Dave, the non soul singing power couple.

I think you and I would strike up an easy friendship in real life, we’d certainly have plenty in common: an art degree, a career in retail head office, a love of good clothes and fashion, a husband that we love fiercely but understands none of those things and drives us crazy at times and, our children. We may have differing political leanings and religious standpoints, and levels of middle classedness, but you look like you laugh easily. I hear in your words the overarching belief in good humanity. And you seem like you can kick arses all whilst being thought of in really high esteem. In short, I think I’d like you to be my mate. As long as you let me take the piss out of Dave a fair bit.

Perhaps this letter should be private, a fist bump, a little note of solidarity. But well, I don’t know your address apart from Notting Hill, and actually this is a bigger message about our children. This is me saying to you, that I know you’re bracing yourself for impact. You see the criticism arising, you’ve seen it waged time and again against your husband. That speaking of Ivan, the life you had together, will be criticised as being used as a vehicle of promotion for your new fashion line.

It’s not fair is it? That this, our joined experience of parenting, could be held against us. Nothing like disability and death to make people feel uncomfortable. For every move that you make during or after feels defined by that whether you speak of it or not. Never before has the line ‘damned if you do, damned if you don’t’ felt more prurient. But I want to tell you that every word that was quoted, the raw honesty embedded, has touched me really deeply in my heart, in that discernible bit of chest cavity that feels ever wounded by this experience.

Truth is, I sort of meanly want to dislike you because you’re so elegant, and your hair always seems so wondrously glossy, but I can’t. Because you admit to being sweaty with the Obamas, that you’d look like you’d wet yourself because of the sweat. Maybe after too many glasses of wine we’d be laughing raucously about how you managed to keep fancying Barack in check too. And whether you’d given Michelle’s arms a little squeeze because they’re impossibly gorgeous.

Then after glass three, we’d maybe have that ‘isn’t it just fucking shit that our glorious, innocent boys had to suffer so much and come through so much. Be such beacons of light in our life, show us that they’d always try to overcome. And then they die. And that is gone, and we’re left to be the strong ones, the ones that keep going. But the truth is, that’s what they taught us. And now, it’s in honour of their lives that we still push forward, get out from under the duvet and drive that seasick like energy forward’. And we’d then laugh again as it became too much.

And we’d only need to exchange a look then. One that says, I’m sorry for you but I’m glad that I can talk like this with you. And laugh about Florence and DD and their dictatorship that we live under with them, but just how fiercely we think they’re the best things ever. And you’d tell me more about Nancy and Arthur, and how they make memories of your time with Ivan so much more alive, the glorious way they remember him or talk about him.

Perhaps we’d go for a run together, and talk about work (not currently obviously, I’d seriously impede your pace). About the importance of taking time away from it, but also finding space for it again. About how difficult it can feel to be a working mother, but the crystallisation of that guilt when your child has such specific care needs and also the flip side of that, the irony being that you seek out that connection to your existing identity even more.

You give me hope Sam. I think you’re ace. I want to read and hear more of your experience. And I know how much the launch of Cefinn will mean to you, and the epic amounts of bravery it has taken to get this far. The next bit of time will be the most challenging, but I know you’ve got this. Continue to speak Ivan’s name, for I know it’s not a vehicle for promotion, he’s the very reason you’ve got this far. Plus the clothes look awesome.

Love, Mrs D.

PS: if you ever expand the brand into homewares…

“From the moment he is born you are living in a situation that is quite surreal and difficult to deal with. It is intense every day, in and out of hospitals. So you become used to dealing with situations week after week that are totally different from [those experienced by] anyone else”*

Yes, this.

Reality and The Fear of Reality

I think the fear of death and dying is something we all silently shoulder. It’s part of growing up; experience and maturity teaching us that we are not immortal. And when we become parents, the weight of responsibility of keeping someone else alive, right from the get go of finding out you’re pregnant, suddenly becomes so real and overwhelming.

We stop drinking. Eating runny cheese. Stress about prawns and pate.

But we are not in control.

We slice grapes vertically, check straps and seat belts, await texts and messages of arrival at destinations.

But we are not in control.

With medically complex children, that checking, that fear, that raw grating breezeblock of fear sits in the pit of our stomachs even more so. An simple illness can escalate out of control. Normal response markers are abnormal. More is unexplainable than explainable. RD died because the abnormal things his body did in response to his degenerative kidney disease, didn’t respond normally to treatment. And yet, those responses had kept him alive and well far far longer than ever predicted.

We are not, ever, in control. 

I have friends whose children have regular, and yet unpredictable seizures. That stop breaths. That change development. That fear rises into their throats weekly, fortnightly, monthly. And they just are expected to swallow it back down. Live alongside the fear.

Accept the lack of control.

In some ways, the tangibility of death feels easier to grasp than the intangible fear of death. There is an absolute, a finite. Something to try and cope with, take some control of. Even if most of the time that control is a construct. That a lot of the time, I feel that I am reminded more that RD is dead than I actually truly think of it. But I’m also aware that I’m so very early in my grief. Shock still feels overriding. That and a heartache that just sits, changes my taste of the world, my ability to commit to conversations in the same way as before. A little foggy distance because I’m aware of a change.

I know that it feels crass for those friends to talk to me about the fear of death now we’re living the actuality. But I know from experience how that fear feels, remember I wanted to run up a hill and punch a fucking cloud? It was stiflingly hard. So hard that when he died, when we entered a real phase, when so much of caring for him suddenly evaporated, dare I say it, it felt easier. Easier knowing how he felt and not second guessing. With only our own feelings to contend with, but understanding that we’re all now dealing with A Thing. Death. We are now permitted to grieve.

I’m living through this intangibility now. This fear that the minute I can’t feel kicks and jabs, that this might be it. This baby has died. On top of my reflux, my throats constricts with fear probably twenty times a day. Not ever for long, as they soon return, but in that moment I feel internally stilled. I may be looking or talking to you perfectly normally outwardly but inside I’m clawing the walls with fear.

So I tell myself, I take a minute to understand, I’m not in control.

Find the present. Don’t Kate Bush it up that hill. Not yet.

And there it is, another kick of reality.

This Way Madness Lies

I don’t normally choose moments like this to write. When the mist comes in and I’m angry, bitter and sad. When I feel like I’m facing the edge of madness. Because somewhere deep down I find a place to justify the heartache, to work it through. To realise that these moments in grief are fleeting. A battle between brain and heart. I wait it out until the victor is my rational brain and the pain subsides a bit.

This will hurt some people. It will make them question if I mean them. And maybe I do, and maybe I don’t. Unkind thoughts aren’t sane, and are mean. They’re mean to me and you. They tell me that you may think my grief has an expiration date. That you are fed up of my crap. That my life is too much, and you’ve got your own sh*t to deal with. That you want the guilt of worrying about me to go away. We are only in control, or out of control, of our own lives anyway.

I think that just because a lot of the time I seem okay, that you judge my grieving. That it’s not enough, and I am heartless. I think you are scared to ask me too deeply because you worry that you can’t deal with the fall out. The thing is though, that won’t happen, because I don’t choose when the mist comes. It comes when I’m sat through the squillionth viewing of The Lion King and the thought that Mufasa is brave, until he’s frightened for Simba’s life hits me like an arrow right in the target. But not when I’ve sat through the squillionth minus one viewings. It comes when maybe you haven’t sent a text. But how can you help that?

It comes when inadvertently I feel like my life should now be judged just as others. That my sh*t is equal to other people’s sh*t. And I will have spent time telling you to think like that, just suddenly, when the mist comes, I don’t feel like that. I feel like actually this pain, this grief of my much loved child, is harder than anything anyone can understand. That actually I need more from you, despite my protestations that I don’t previously, and I expect you to see that. To know that. That at that very time, the time you don’t know has come, the time I wasn’t expecting, I need you to hold me so very tight and tell me that yes, this is the most awful thing anyone should have to endure and it won’t get better, even if we both know it will.

The mist comes and I am majorly f*cked off by you taking everything you have for granted. By you having the audacity to moan about anything at all, worry about anything. That you need to check your privilege. That you need to put your sh*t on a sliding scale and deal with it. 

It’s cruel because it’s invisible to you.

The mist is grey, cold. It’s minus three degrees. It makes you come back in damp and in need of warmth and comfort. But it goes. It goes.

When it’s gone I know you’re trying your best. Motives unmotivated. And know that I’m trying my best. 

Bad Fit

The underwire from my bra is in crisis talks with the space that is decreasing between the top of my burgeoning tummy and the fecund heavy boobs above it. I try and shove my waistbands in that gap now too as ‘under bump’ clothing for me succumbs to gravity far too easily and there’s only so much pull up and wiggle you can manage.

I have quite a forward, neat bump this time. It sits like a sliced new potato on my frame. The skin on top is taut and feels feather fine, so already those jabs and twists can be seen and felt from the outside. It’s almost as if I’m not allowed to distance myself from this pregnancy despite my heart trying to build a force field around itself. Don’t feel too deeply, not yet. Just always keep a cushion of concern to hand. 

I inject it daily on either side as if I’m performing a scientific experiment on a boiled egg. DD watches to see if I wince, asks if it hurts. I reassure her it doesn’t. Which isn’t the whole truth. It’s just this little jab reminds me I’m alive, this baby is alive, and I’m doing all I can to keep everything there. So I like that little pinch, that morning ritual. Plus I use it as a reason to avoid taking the dog out for his morning ablutions and needing a cup of tea in bed.

I returned to work this week. And of course, it was absolutely fine. I feel like me and I don’t. It quantified the loss of RD and it didn’t. I yearn routine and regularity and yet the otherworldly nature of the last eight months fit unexpectedly. I had to learn to let go of control, and be responsive more than proactive. And in return I felt RD showed me more love and light than he’d ever shared before.

It doesn’t signal a change in my grief. I don’t feel anymore on top of the pain or surprise that he’s died. I haven’t made space for it, I just try, and try being the operative word, to accept I don’t know what I’ll feel from one moment to the next but to allow that in. It does mean I have a focus and a reason to put on makeup. To lessen my slipper wearing percentage of the day to sub 50%. To give my brain a task it’s fit to cope with.

It also makes the time waiting, and watching, for this new baby more easy to strategise. I plan my itinerary and it slices and dices weeks and goals. So that now, as I approach 24 weeks, I can see what I’ll be doing and when until 28 weeks, the next time I have a scan. A little bit of light cracks in that I’ve reached the point of viability. 

I remember with DD, whilst not a pregnancy after loss, but a pregnancy after a very traumatic experience, reaching a point where the worry drifted. And that was all related to getting through critical points on the timeline of my pregnancy and birth with RD. But this time, it just won’t come as I feel like I’ve lost any innocence. 

I’m making real in roads into trying to normalise my pregnancy- through treating myself to pregnancy massage, and going to a weekly pregnancy yoga class. And I’m really enjoying both, but I still feel quite outside myself. Like I’m just wearing this sliced new potato. Like I’m just wearing this cloak of grief.

I think I’ll channel DD on this one, and give zero f*cks.

Happy You Year

Or perhaps it’s Yew. Basically, DD can’t pronounce New. And you know, out of the mouths of babes and all that. I’m like a stuck record, or actually I aspire to be a stuck record, because as I’ve mentioned before, the rampant steamroll of time whilst you are in the midst of grief is one of the hardest crosses to bear. It feels like it picks you up and tips you forward, which on the one hand is useful. I have DD to think about. And yet I feel like flotsam desperately trying to cling onto the edge. To get back. Not to be purged further away from the event and the memories. Not to feel like at any moment I’m going to stop, turn round, and see it as a speck on the horizon. Unreachable and forgotten.

The thought of New feels like Old is bad. When for us, right now, Old us was a very real family of four. I look back a year, which is inevitable at this time, and I see us facing uncertainty and yet buoyed by hope. We had RD’s inimitable strength as a beacon, dialysis and transplant were stages which he had fought against previous timelines and prognosis set against him, so we could take on this new development. Ultimately what we should have known from experience was to expect the unexpected. But this time with a more negative bent. But RD was present and with us. Yes, we had had some shit times at the back end of last year, but physical living, screaming, pooping headcount was the same as we’d started with, and we clung to that. I doubt anyone ever thinks this about their offspring, but our kids ARE the best and we were happy with that.

In the same vein, you may also not have noticed how many famous people died in 2016. And you know, I’ve also been sad about some of those people too. But what I’ve come to realise that feeling sad about public figures dying and personal grief create two quite big tranches. Of course, the families of those figures will know this. So whilst we may hope that the passing of 2016 may be the turning of a leaf in a book, and a hopeful slowing down to such public loss en masse, for those who have experienced personal grief the turning of that page only adds to the hurt.

New doesn’t feel Happy. But You, or Us does feel better. Let me explain. By clinging to what we have, what we have endured and the memories tied into that is where I retreat. I look into the eyes of DD, listen to the wonder in her words and can’t believe how much love I feel (when the mouth isn’t screaming, or her perfect eyebrows aren’t arched into a ‘what the f**k’ expression that makes me prematurely grey). On Christmas Day, when being put to bed, she pulled her picture of us all close to the side of her bedside table. She started to cry.

“What’s wrong sweetheart? Are you sad about something?”

“Yes. Mummy, Santa doesn’t know RD is in the rainbow now. He didn’t take him his presents because he didn’t know!”

Tell me you didn’t just curl up a little bit inside? This newly bob-haired four year old, angelic in her fairy pyjamas, with this worry crinkled across her brow. I promised her we would write to him, to make sure he hadn’t forgotten, even though I was fairly sure the all seeing Father Christmas knew. I left her room, softly closed the door behind me and sobbed. Because she drives me crazy with her strong will and yet has such a sweet soul. Because as time passes will we forget to go to the rainbow?

We will inevitably all change, and let Newness in. DD continues to grow and change, I get ever rounder and feel this new life inside kick and turn. But they carry such a bittersweet movement. Because really, where I want to be right now, is back in time. To hear RD splash and giggle with his self operated footspa, to see him cause rampant destruction and sweep up behind him, to let him stick his fingers up my nose and in my mouth and pull fistfuls of my hair so that I’d kiss him again. To revel in him, and all that he taught us. But we have no flux capacitor, and at 88 mph our Skoda merely peaks out a bit.

For this year, let’s remember that auld acquaintance should never be forgot.


Pregnancy After Loss

I’m not massively keen on the word ‘loss’ when describing death. I’m pretty sure that losing my keys feels very different to my miscarriages, or my son’s death. Plus, I know where they are. They’re not misplaced, waiting to be found. They’re gone, forever. Although RD still feels so incredibly present, the fibres of his soul sewn into every part of me, of us, that he’s not lost. I can find him everywhere.

So really, this is pregnancy after a lot of terrible and difficult life experience. An experience that tells me currently bad things happen, and can keep happening. My own fault for being an eternal optimist. Or someone who keeps getting back up and trying to move forward, at least for now, with the view that nobody gets to the end scot free. I’d rather be pig headed and seemingly reckless at times, because I don’t want my epitaph to read that this was a life half lived.

This pregnancy is hard. It’s so present in spite of my attempts to distance myself from it, a conscious reaction to try and soften the hurt that I’ve learned to know will come. It makes my clothes not fit earlier, food to taste weirder, things to smell abhorrent at times: sorry new dog and husband.

I make decisions not to project too far forward. Not to think beyond each tiny step. The threat of Christmas eclipsed by the 20 week scan today. Thoughts that if that trap door opens again, this could be a Christmas spent in hospital, again. But this time for me, off my t*ts on drugs knowing that I would be birthing a cryless soul.

Or, the threat of complications. Of more invasive tests. Of large needles puncturing my swollen abdomen. Of interminable waits for results filled with worry. Decisions being placed in front of us in small rooms with hard, faux leather sofas.

I should point out that I have a very different view of ‘complications’ now. It doesn’t mean I’m naive, but as a direct example, it’s put me on a one woman mission to make it awkward for them to tick a box during ‘routine screening’. Here’s my beef: currently you can choose to select to be either screened or not screened for the three main trisomies: Down Syndrome, Patau Syndrome or Edward Syndrome. What does this do psychologically to the unitiated on disability? It groups them together as having equal gravity. And yet they are as similar as Brie, Camembert and chalk. So I have insisted, whilst explaining my point calmly, that I wish to be tested on two trisomies, but not Down Syndrome. The two that are currently considered extremely life limited. And that’s because for us, forewarned is forearmed in terms of exacerbated grief. And yet, RD has taught us that we can not only be parents of a child with intellectual and physical disabilities. We can all thrive from it. 

“Will you find out what you’re having?”

“Yes. First step, hopefully still live. Second step, healthy.”

We dare not dream of worrying about something so seemingly insignificant as gender. And yet of course, it’s not insignificant. It’s the start of connection, hope and dreams. The thought of what comes after RD and DD, and the babies gone between.

Today I got to find out. We passed A and B swiftly and easily, as I’d only dare dreamed of before. This baby making themselves so present still, so strong. At the words of the sonographer “I may need you to come back just to get a better view of the heart”, they flipped and turned, presenting it proudly to the probe. Wolf has chosen not to know, and we respect each other’s choices. 

Whether ultimately good or bad news, shock causes the same visceral reaction. The extreme high or low, followed by disbelief, followed by the ebbing away of adrenaline leaving you exhausted and not sure which way the top is. 

So I write this under a blanket watching Frozen, DD cuddled in one side, Eric the dog warming my right flank and my eyes staring unblinking from time to time at RD’s photo on the mantelpiece. Wondering how on earth we’re here, or how this is my current reality. A warm glow cooled by a marked absence, not loss.

I’m still not sure I have renewed hope. I suspect I will lurch through this pregnancy, never fully believing in its ultimate success. Because that success will always mark a gap in us all. But for now I’ll take some of the lightness it brings, and hold on to the continuation of a path we’re on.

Seasonal Affective Disorder

I always like to be ahead of the game apparently. Couldn’t wait for the post climatic slide through January and February’s sludgy weather and skies to feel the cloying weight of bleurgh-ness. Can’t-be-arsed-ness. Bereft-of-f*cks-ness.

Today marks three months since the day RD left us. And in a cruel twist of life, it falls on a Monday again. I don’t like the fifth of the month- naff off Guy Fawkes, and I appear to have fallen like a Boomtown Rat, because Mondays are pretty much unlikeable. And that’s even when I get to palm DD off at nursery.

But really its the bigger thing that sits round the corner. That the shops start playing the tunes for in September. That as a retail buyer is on my mind in January. That some buggers now start putting their trees up in November for. I can’t even refer to it as the C word as that understandably has other connotations. So here it is: Christmas. The Carbuncle on my horizon. My social media feed full of anticipation, excitement and seemingly competitive edge for who can be more Christmassy.

We learnt six years ago, when there was zero chance my October born son was going to make it home from hospital for Christmas, to drastically change our expectations for the day. To stop throwing so much hope and anticipation its way. Because you know, its just another day, right? And yet I wanted Christmas to wrap me up and hug me with its promise of warmth, joy and goodwill to all men. Envelop me in the fug of too much food, booze, Quality Street and brussel sprout farts.

For four years of RD’s life we spent Christmas in or hovering around the hospital, with his fondness for using that time to throw in a bastard of a festive bug. So we stopped planning fun, tree decorating. Anything too jolly, as it felt ominous. Like we were jumping the gun. But I tell you something, RD caned it on the present front in those years. And they say there’s no connection…

But that was the other thing. He had no idea Christmas was a coming. He wasn’t making demands for a Hatchimal or a Cabbage Patch Doll. Writing a letter to Santa. Even show any interest in trimming the tree. He was always pleased to receive a new annoying plastic, bright, noisy toy. But we had to shift our focus on what eyes he saw Christmas through. On the other hand, DD has been asking since February when Father Christmas is coming.

But in the last few years, we have had the perfect storm of a Christmas. DD and her bright exuberance for everything Christmas related EVER, bar sprouts. RD got his Scooot. For the first time, aged four, we could suddenly understand what he wanted for Christmas as he mastered his mobility and showed us what he could enjoy. He shook and rustled the tree branches, giggling as ornaments rattled and fell. Turned them over and over in his hands. Ran his fingers through the fir pines. Push himself to the front of the TV to watch the Christmas films. And I mean right at the front, so the pixels burned his eyes. Rush round on Christmas morning stealing his cousins plastic, bright, noisy toys from their piles, their clutches. Messing with the bottles of booze stacked up, rattling the corkscrew. Crunching and tossing aside piles of wrapping paper. Hiding and weaving in and out our legs at the dinner table. And his health gave him some respite.

The magic was back, but better. Clearer after the storms. This was RD’s Christmas, and we had had to learn gratitude for the new normality. I wish I could zoom back a year, tell myself, “Hey, slow down. Take this all in. Breathe deep.” But who knows, I probably thought I was. In amongst pregnancy after loss, working and day to day everythings.

This year. This December. I want to rush round and pull back some of that. Decorate the house to an inch of its life. Foster DD’s enthusiasm, even though I wonder how much this confuses her too. The ever aching void of life without him. Fill it with tinsel and tat. But every twinkling light, every brass band, every handmade ornament from previous years, every pair of Christmas pyjamas hurts my eyes. Because they mark his absence.

I suspect this Christmas will be calling upon the early years of survival, hanging on to DD’s coat tails, and marking the change in all of us.

And no, I will never get a frigging Elf on a Shelf*

*Unless DD demands it, as I bend to her wont