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

Life After…

The night RD lay between wolf and I, taking three breaths, missing three. The night when each time he paused, I paused, my mind raced. It ping ponged: how could this really be happening, don’t rush it, breathe it in, take away his pain, now. Time hung on elastic- too painful to live through and yet not wanting it to conclude.

To cope my brain tried to float: what day is it? When is the first day of school term? When is DD due to start preschool? When is my period due?

I knew the answer to the last one: tomorrow. You see, we had booked a last minute holiday for all of us when RD’s bloods had given us that last breath. I did it almost to test myself; never quite sure that we’d make it but enough to show hope in the future. The week when he declined I’d been thinking about packing on the Monday, for the following Monday, in the way we always had to with RD. 

Monday 5th September. Feeds, sleep- how, where, new medicines, creams, swimming costumes. Ah, swimming. Must remember tampons.

RD passed away early that morning. He was cleaned, dressed in fresh pyjamas, and wolf and I carried him down the corridor to the little room. My mind had calmed, hit by shock and sadness. And I thought, oh, today is the 5th. That unmistakable ache wasn’t there, the regular as clockwork start.

Later in the morning, wolf and I decided to take a walk. Except we knew our destination- buy a test, take it, put our minds at rest, move forward. There, bright and strong, two vibrant fuschia lines. Fuck. 

There was an overdue pause as neither of us knew what to say. Congratulations? More expletives? Do we tell anyone? Do we need to contact the hospital, to see if the doctor who saw us after Tiny and their sibling remember us? Remember the potential strange condition they mentioned and what should we do? All on the day, within the morning, that our eldest son had died. I’ll say it again, Fuck.

Each week that has passed with him gone has been the passing of another milestone of life for this baby. I live in sphincter clenching worried ambivalence. Make no sense? More of my hormones later.

I had this thing, this weird thing, a thread that played on repeat on my mind when pregnant with Tiny. One In, One Out. The connection to that pregnancy, or being pregnant again, always felt somehow intrinsically tied to RD’s life. I can’t explain this. I don’t have faith to rely on. But I do question whether everything is actually mapped out for us and we’re subconsciously following.

So when we lost her, at 20 weeks, or in fact at around 15 weeks unbeknownst to us, I thought that’s it! I was right to be worried. And then falling pregnant again so quickly after felt like hope, like things might get back on track, only to fall further with that miscarriage and RD starting his kidney failure journey so soon after. 

And then this, altogether shocking and yet somehow not. There’s a little seed in me somewhere that is grounded in this and believes in being able to hope. And then there’s bastarding life experience which has ground me down, and makes me couch every sentence with “all being well” and “if we get that far.”

I’ve wondered whether to come clean about this pregnancy at all. In fact, until today’s scan, which I went in fully prepared for them to tell me my baby had died, I thought I’ll never really tell. Because somehow speaking your hope and joy out loud gets you smacked back down again. And I still have 24 more weeks of pregnancy to get through. 

But here’s what I feel I’ve learned: that all life, from conception, deserves to be recognised. Deserves to be treasured. Needs to be talked about. Because love starts the day those two lines appear and continues way beyond death. It will continue for my entire lifetime. I am mother to five children.

Now, about those bloody hormones. 

Here’s a list of things that have made me cry:

  • John Lewis Christmas advert. Not the ACTUAL advert, but the very notion that they had made another one and it would be coming soon. The actual advert, meh.
  • The Ikea advert with all the lights. Half an hour of heaving sobs. Every time.
  • The dog pooing in RD’s bedroom. Oh, I’ve mentioned that before.

I hate all smells. Wolf was especially pleased with his likening to “smelling like a charity shop.”

I have convinced myself this baby is dead because:

  • I’ve been sneezing too much
  • My bump isn’t quadrupling in size every second 
  • DD accidentally kicked me in the privates, hard, when playing our ‘chase each other round and kick each other’s bum’ game*

*disclaimer, it’s a very gentle tap, not an actual kick….

Tiny Dot, the start

16 weeks

The Dog has Sh*t in my Dead Son’s Bedroom

Yep. In fact, he’d also nibbled his memory box, and had a wee too. And DD was opening and slamming his door whilst refusing to get dressed out of her pyjamas.

I stood there helpless in my towel post-shower, cold and fucking miserable. My husband was busy vacuuming downstairs as I’d already had a go at him about the state of our hovel this morning. You could say I was a victim of my own success.

At that moment a precipice opened up beneath my feet. Should I jump in and unleash ten shades of unholy hell at everyone, my face twisted, red and streaming snot and tears? Or should I decide that actually, this is pretty funny. The expression if you don’t laugh, you’ll cry (and probably never stop today) hit me square round the back of the head. I managed a hybrid, which was 70% snorting.

Yesterday, en route to Mumsnet Blogfest I phoned home, given I had abandoned wolf solo. He’d apparently ‘turned the house upside down’*- or man looked- for DD’s swimming costume that morning and in desperation had sent her off swimming with my mother in her dead brother’s swimming costume. 

*Given the hovelesque state of the house mentioned above, maybe there was an element of truth.

And that time I actually did laugh, loudly. And recanted the tale. Because there is a lot of light in this shade. 

Just as a ridiculous hunt for spray that might stop Eric pooping where I don’t want- an anti sh*tting spray if you will- and the confusion in the choice, had me sobbing in the aisle of Pets At Home. 

Obviously I forgot RD’s room.

Back to yesterday, and Blogfest. So, I didn’t win Best Campaigner. And whilst it would be a big fat lie to say I didn’t feel disappointed, it’s not because I expected to win. It’s because my emotions and nerves simmer so close to the surface right now, I’m surprised you can’t see the bubbles in my hair follicles. I didn’t expect not to win not through some false modesty, but because I’m not sure I believe in myself as a campaigner. Or know that I am. 

What I do believe is that the votes that made me a finalist show the importance of real life story telling. Of letting people in. Making connections and narcissistically feeling relatable when thankfully my circumstance is pretty rare.

There were some extraordinary and empowering speakers yesterday; authors, comedians, actors. Everyone with something to impart and share, and so much from personal experience. The best examples of light within shade

Grief is bonkers and nonsensical. It means that I can put on a nice frock and new boots, stand and chat and thoroughly enjoy myself yesterday, and today left me exhausted, flat and unwashed. 

But there was roast chicken at my mum’s.

Leave the Clock Alone

I don’t want the clocks to go back, the hour to change. For life to show me time moves on rampantly, blindly.

I wish Halloween would do one, the ephemera of death hanging around as if to taunt me. 

But then it’s the start of the festive season. I’ll struggle to find my pocketful of Ho Ho Hos.

I have a freshly turned 4 year old brimful of excitement and wonder at all the promise of the season. Who will see us through each day, but barely give us space to breathe in the void RD leaves behind.

The days trip into each other in numb exhaustion. Bar the hours between 2.30am and 4am. They are painfully long and quiet. 

There is happiness and freshness in each day, and it’s been a really glorious autumn, but I’m like a sponge finger dipped in sadness. That bit of the trifle that holds it together, until pressed.

Then there’s days like today. Days where I selfishly need solitude. To do an ugly cry. The ones where you feel like your eyelids might turn inside out. When you don’t recognise the primordial cries coming from your throat. And yet, it just brushes at the pain. Barely dents it.

When it’s hard not to let anger in. When you feel that decisions are made on assumptions rather than questions. I can tell you this, how are you? is never defunct. I can’t promise to tell the truth, or a torrent of emotion, or perhaps worse, a nothing because at that precise time, words can’t really convey how it is. Well, maybe a choice swear word or something.

Grief seems to involve fine tuning forgiveness. Probably because after the event you realise you’re not angry at that event at all. You’re just fucking angry that your child died. Seven stages of grief or whatever right there.

So I hope people forgive me. Stick with me when I withdraw, or throw stones. Or just am myself but a bit hollow and vacant. I want to hear all about you.

I’ve also realised I’m barely touching the events of the last year in actuality. I’m just circumnavigating this huge gap in our lives. I watched the finale of The Fall (slight spoiler alert if you’re saving it). He strangles a man, and then suffocates himself. And suddenly this portal into the time RD eventually stopped breathing opens up and it’s so glass shatteringly painful I feel like all my insides have just fallen into my feet. Which has just happened remembering that memory of a memory.

Some things are moving through time and changing for the better though. Eric, our new puppy, is growing up and calming down, and DD and he are less of a petrol and match combination. We can now take him on (short) walks which means our four walls feel a little less close.

DD seems to becoming a little more emotionally aware. Rather than telling me to stop crying, or to not cry, she offers a cuddle and closeness. There are still the epic boundary pushes, and she’s working through the Why? stage, but her little giant mind is obviously making sense of things.

Current obsession: baby in her tummy.

“Mummy, how does the baby get out my tummy”

I am navigating the m1 in half term traffic. I can only figure that honesty is the best policy.

“Well, when RD was a baby in my tummy, he needed an operation to come out. When you were a baby in my tummy, you came out my noo noo.” (Midwives all over now contemplate whether it should be NNBAC)

Disgusted noises from DD.

“Well, I’m going to hospital to get my baby out tomorrow, okay? It will have sore bits like RD”