Pants on Fire

It’s not like I go out of my way to lie. In fact, often, perhaps it’s myself I’m kidding on more.

Is it really lying when the truth is inconvenient. Uncomfortable. Inconceivable?

It starts innocently. My newborn baby opening up a conversation without uttering a word.

“How old is she?” Funny how 9 times out of 10 the gender guess is incorrect.

Truth: “He is (insert number of) weeks”

“Oh, sorry. Is he your first baby?”

“No” -gawp around inwardly for an answer- “Third”. There it is, lie number one. Two babies unmentioned.

“Ah, an old hand then. What do you have at home?”

“A boy and a girl. 6 and 4.” Mega fat lie alert. Or is it? 

You see, RD still feels so very present, in that the space he leaves behind is unfillable. It sparkles, fizzes. Sometimes feels as murky and pitched as a black hole. He is stitched into every atom of our house, our hearts, our brains. He is here and not here, always. But that’s not an answer for the checkout in Aldi.

There are lots of new decisions to make around raising BD, and I wonder what a snapshot of that looks like. Probably not like some of the truths that sit behind them.

It started with DD when she was born. To get her and RD out of the house in his wheelchair, or to survive the monthly hospital stays with RD and a newborn, she spent her first year in a sling. Strapped to me closely freed up my hands and calmed her. Win win.

Now, with BD, again, I rely on the same. 

“She looks very cosy in there.” Can’t always be bothered to correct gender. 

“Do they not get too hot in there?” 

“Always seems a miracle they can breath in there”

The truth: I love feeling the heat of him, the weight of him, his breath damp against my chest. After a pregnancy so full of fear, anxiety, and a desperation to get to the end, with a vague grasp on it being successful, this is my exopregnancy. He’s on the outside, where I can see and believe he’s okay. But here, tucked in next to me, he’s still part of me.

This truth, my trimester on the outside, lies behind breastfeeding BD as well. I am lucky in that bar the usual difficulties: soreness, leaks, tennis elbow, I don’t struggle. BD doesn’t struggle as DD didn’t before him. With RD I pumped and pumped- alarms set, sat in soulless rooms in hospitals. And he couldn’t tolerate even 1ml every hour. A fifth of a teaspoon.


With RD I felt I’d failed twice. DD helped repair some of those negative thoughts. And now, with BD, where I worried that something drastic may happen with my placenta or cord, here I can give him life and watch him grow. Not wait between scans. 

Plus, with all I have learned along the way, I have mastered no hands feeding. Which means I can feed and put on make up. Do my hair. And, more altruistically, dress up dolls and do jigsaws with DD.

Let’s cycle back to the fact this is my third child.


“Ha, with your third it just whizzes past. You completely let go of all the ‘should dos’ that you impose first and second time round”

Agreeing to this isn’t a lie. It’s true. But I’m so conscious of it, the stampede of time. Even in four, nearly five weeks, every tiny molecule of change feels drastic. With DD I was keen for her to show her next skill, after RD had missed or ever so slowly achieved the tiny steps that would eventually lead to something like a milestone. A yardstone.

So I take far too many photos. Which I spam far too many people with. I document and keep. Try to squeeze every cell of my brain to remember this as it is. But new cells, as some are ringfenced just for RD.

Because here’s the most uncomfortable truth. Sometimes, my arms and heart are so full of two children again, that the hole RD has left behind isn’t so big. Or maybe its edges feel less jagged?Because it’s reminiscent and yet completely different from before. I’ve got something I wished for, hoped for. Which after a plateful of everything I feared, I simultaneously take in voraciously and grieve that it isn’t as it should be at all.

30th May 2017, the chubby knuckles of BD. 30th May 2016, the delicate grasp of a desperately poorly RD.

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.

Because Who Doesn’t Love a Birth Story?

Somewhere I still can’t believe I have one to tell. I feel too lucky. I’m gradually allowing that heightened fear I’ve carried for 38 weeks, 34 weeks since RD passed away, ebb away. Because his brother is here, all Ray Harryhausen animatronic startles, peach fuzzy haired and pink skinned. Long fingers, legs and toes. The D cupid bow lip.

But before I gush hormonally about this bittersweet euphoria, I need to go back to last Tuesday. Last Tuesday when I erupted into tears on the maternity assessment unit, and they wouldn’t stop. The day I told them I couldn’t do this anymore. I couldn’t carry the responsibility of keeping another child alive on my own any longer. I needed to meet him. I was climbing the walls with anxiety. I had spent another sleepless night obsessing over movements.

My consultant the previous Friday, the Friday where we weren’t sure if a baby would arrive before Wolf would finish the marathon, was so sure I would go into labour naturally. Unfortunately this meant she hadn’t updated my notes thoroughly enough to say that if labour didn’t come, I was to be induced. And now she was on leave.

At first, I was kindly told that I had to think of the baby’s needs. That if he wasn’t coming yet, it wasn’t his time. I appreciate what they were trying to say, but that nail hammered in my heart was enough. That mere question that I could be putting my own needs above the health and wellbeing of my child. So I channelled my tears, and the billions of hospital hours I have clocked up since 2010, and calmly presented the facts. The core being that I was physically and mentally exhausted. That was more of a risk to labour and my unborn child.

At this point, I cannot praise the attitude of the hospital more. They listened, rechecked my notes, escalated the situation and we came together with a plan. Another stretch and sweep administered, and a plan to induce me on Thursday.

Wednesday was just Wednesday. I feel I need to tell you that for continuity.

So, Thursday. I had to call in the morning for them to allocate me a time to come in. I already knew that after a chat about the ‘condition’ of my cervix, favourable apparently, that the most likely plan would be to break my waters and see what transpired itself. I googled Artificial Breaking of Membranes (ABM), and when told to go in at 1pm, arrived armed with questions. 

I’d been induced with DD in the days of Propess and consider that a successful labour. But you know how they tell you every labour is different? Probably REALLY should have considered that. But I had no fear of labour, and didn’t really care to plan for it- that was a little silly with hindsight- the fear was just getting to the other side of it.

We agreed that once the labour ward was ready, I’d move there and check again, but I’d allow to start with the ABM. I was moved over at around 3.30, settled in, and by 5pm the attempt to break my waters began.

Big crochet hook. Little crochet hook. A lot of ferreting around. Baby had his hand up by his head and actually plugged the hole with his finger. You couldn’t make that up. I felt quite violently assaulted by this point. But then the dam was released by the little Dutch boy and suddenly I was sitting atop a patchwork of conti sheets on my birthing ball in paper pants, expecting to endure this indignity probably at least overnight.

Now, I’d gone in planned for things to take some time. Books, magazines. Mid way through an article about an ex Big Brother contestants 50 sausage a day habit I had my first contraction. And then another 3 minutes later. I suspected at this point my plan was a little off. 
By 7pm I’d texted my mum. In the half an hour she took to arrive I was chugging on gas and air and climbing the bed. From this point on any lucidity or control I had on the situation was gone. I’d had a brief chat about pethidine but it just seemed as though things were moving too quickly and in the blistering white heat of pain I couldn’t make the call. This was a mistake. The pain only intensified and I felt completely ripped apart.

This, combined with the fear I carried, meant that apart from the transition period where I felt my mind explode with the other world, I was mean and sweary. The air was blue. I called the midwife a f*cking c*nt (I’m not entirely sure why). I told them my baby was dying when the monitors fell off as I crawled round the bed, jackknifing. The monitors screaming through the fog.

“Get off my f*cking nightie!!!” As they attempted to salvage my dignity.

It was all too fast. Apart from the pushing. Being out of control of my pain meant ultimately I was resisting pushing effectively. That and he has quite a big head. An hour in, I needed to swear less and accept help. In the end that help was a catheter and a foot on each midwife apiece’s hip. 

The bowling ball of fire quickly appeared at the foot of the bed, screaming. I’ve never really understood how a fast labour could be shocking, but now, I know. I was incredulous that in 5 hours I’d gone from ‘ooh is that a contraction?’ to watching this little fish at the foot of the bed flip and flounder.

As I lay back with him in my eyes, taking in his hot little form, the room came swimming back to me. I was being stitched and yet suddenly it was painless. I apologised to all, profusely. They were all remarkably lovely if not a little battle scarred.

Wolf and I had earlier known which name was coming up trumps in our shortlist, but decided to just take one last chance, see if it sat right whilst gazing at this baby. This baby we barely dared to believe would ever be a reality. And it was. Barnaby Summers had arrived in an untimely timely fashion.



Running Out of Time

Saturday: mid afternoon. Something crunched down into my pelvis, the pressure makes me gasp. I spend the afternoon feeling sick and yet my ribs have stopped hurting. I get home that evening and check through the hospital bag again.

Sunday through Thursday: same as Saturday on and off. Sometimes a lightening bolt feels like it fires down the inside of my thighs, making me stop, hunch. Yet, nothing.

Thursday: 3am. I phone the midwife. I say I feel crazy, but after 2 hours of being kept awake by what feels like a burrowing bunny trying to get out my back end, I felt I should call in a change of movements. An increase.

Thursday: 10am. Preparation for labour reflexology with the wonderful Deanna. Apparently my feet give away my week so far.

Friday: 4am. I wake up in a cold sweat, drenched. My tummy feels still and rock hard. I prod the edges. Pace about. But that’s it: I know he’s gone. My pulse racing in my ears and the tinge of sick in my mouth, I wake wolf and phone the midwife. Then push, pound, turn. He’s back. I cry and cry in relief.

Friday: 7am. A wobbly, sleep smelling DD crashes into her bedroom door and flails along the corridor before climbing over wolf and snuggling down between us in bed, her little heart going ten to the dozen. She snuffles in for a cuddle. A foot prods her from inside my tummy. She looks up and says “ow” with a wry smile.

I tell her we have to get up and get ready this morning- no lazy games of Marshall Pup hiding under the covers that have marked the rest of her Easter holidays. She asks why?

I make a mistake, I tell her that she has to go to Grandma and Grandpa’s this morning as Mummy and Daddy have to go to the hospital for an appointment about the baby. I only realise my mistake too late, when her behaviour becomes uncooperative and wild. I’ve not said before that we have to go to the hospital for appointments for the baby before. And I know for her, hospitals are sad places. Hospitals don’t make people better.

Friday: 8am. A brief interlude in the general stroppiness as we all get into the car, and Scatman John comes on the radio. In car dance party on the way to Grandma and Grandpa’s. All of us relax a little until drop off. Dog and child burst out of car in mass of limbs and barking. Quick hellos and goodbyes.

Friday: 8.30am. Arrive at hospital. Find I’m booked into the wrong doctor’s clinic. Have a mini strop in the thankfully deserted waiting room. All gets sorted, I get hooked up to the CTG monitors. My heart rate and the baby’s are racing. I explain the movements situation. All becomes calmer as I’m reassured.

Friday: 9.30am. I see my consultant. She is lovely, we talk about the last week. My mental state and anxiety. The baby. We agree on a plan. But first to see what’s going on down there. Knees up, deep breath, a pain that reaches from behind my knees to my ears. Feels like she’s turning a pretty big key in there. Out, down, relax. 2cm dilated, soft and short. 

It’s what I needed to know, to hear. That my body was preparing. That things maybe, just maybe, may resemble something somewhere near normal.

However, it brings up a problem. Wolf and DD are due to head to London later in the day, in preparation for him running the London Marathon on Sunday. I could go into labour any time now, which I know Wolf wants to be present for- but before he meets his new son, I know he has to complete this for his first son.

It’s not like the meeting of our full term due date with the date of the marathon are in any way a surprise. It’s just we didn’t feel like we could invest in either, and in the midst of grief, Wolf has found the solitude and fresh air a chance to breathe out and take time to be with his memories and thoughts.

I know this, because in RDs lifetime, I used running as a similar means to an end. When your mind feels clogged and chewed up, just concentrating on the rhythmic pound of your feet on ground and clocking up miles shakes sense back into them. I watch him go out in envy, and attempt something similar whilst waddling and watching Eric cavort about the moors.

But clearly, from Friday’s example, it’s not enough. I simultaneously long for my own body back and the chance for that freedom but I don’t want to beat Wolf to the finish line.

So, who knows, on Sunday if either of us will feel a victor. I certainly hope we’re not comparing blisters and grazes next week. In the next few weeks as the dust settles from both, and we emerge with two medals of victory- albeit one that’s more likely to cry and poop- who knows where we’ll set our goals.


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AGM

We’re in it now. A year since RD started dialysis. I have been for a few weeks.

I’m not sure why, but so far since he died I have only really been living in memories that fall within that year. I peek back further, but they’ve sort of mashed themselves into a pre one year ago burger. His birth tumbled into neonatal squashed into coming home, pressed between the years of raising two tiny humans and finally finding stability until it All Changed.

You could say it changed when we lost Tiny. Her little alien form never getting past halfway. Or then the sibling that has no doubt been washed to sea, with the fairground goldfish. But because they remained fairly abstract they were rudely quashed by watching RD battle and lose his life. At some point I think my bungee will allow me to delve back further, but for now, I live in my memories of a year ago. It shunts along with me every day.

The last few weeks have really stalled. DD has hit peak tiredness at end of term, combined with an inability to express her fears as to exactly why Mummy looks like she’s smuggling a bistro set under her clothes. She doesn’t want to feel him kick anymore. She’s stopped talking about her baby, Daisy. The last conversation she told me her baby would be tiny and need a wheelchair. Yep. I may have lingered slightly too long with my head stuck in the fridge before turning round to look at her.


So one day lasts for what feels like two. I find myself snapping and shouting at her more than I want. She responds in kind. Wolf is really, really enjoying his marathon training.

It feels like I’m getting to a destination where suddenly all I’ve held in for a year will be released somehow. But my heart is so scared of that, and keeps reminding me at inopportune times, that this baby could die too. And I’ll still be on hold, waiting for release.

I have lived a year where I held in my fears and pushed and forged ahead to get RD towards transplant. A year where I pushed and forged to give him the best of everything whilst simultaneously quieting a fear that he could die suddenly.

I have lived through being told he would have weeks of left of life but believing that actually, maybe deep down somewhere they were wrong and willing him to live, just a little longer.

I didn’t get a chance to surface before carrying this life. And somewhere, on that day, it changed on a switchblade and despite gathering evidence that all will be well with this baby, I carry the weight of the fear that he will die.

Both are just beliefs. My head knows the circumstantial evidence is telling me these beliefs are wrong, but my battered and bruised heart is bracing itself for a fall.

Just because you feel it,

Doesn’t mean it’s there.

Radiohead, There There


RD, one year ago.

Pinch, Punch. The Fifth of the Month.


I have had an endoscope up my bum.

I have had a speculum in my, well you know, I can’t whisper vagina whilst typing.

I have most likely got a UTI. Thrush. And I’ll most likely need surgery post partum to sort out my back end.

My ribs feel barbecued.

I drink gaviscon as a night cap, lactulose before my morning brew. 

I sleep in clutches. Wander about on my own in the still of the dark. Sometimes carrying a four year old back to her own bed as her starfishing plus the baby’s tumbles make me want to silently scream. To find some peace.

Hot compresses. Cold compresses. Daily baths.

Last week I ended up at the hospital having thought that my waters were leaking, to have a hot, young student doctor look at my bits with a builder’s torch, me naked from the waist down bar my Christmas socks and reveal that I’d most likely just peed myself a bit. I did not expect to see him again the next day at my community midwife appointment…

Essentially, this thing that I am so unbelievably grateful for, and fretful over, is leaving me in an undignified and exhausted state. Or is it wading my way through grief that means my body is struggling with this pregnancy. In the middle of this Venn diagram it looks like someone’s put a wash on.

And on that 60 degree cycle someone has chucked in some single socks, my sanity and my pelvic floor.

Since the weekend I have believed I have a DVT (despite being on blood thinners), preeclampsia (my socks are leaving some serious ankle rings) and that’s after I thought my waters were going.

The slow closure to this pregnancy brings up daily grief. Not always obviously. Sometimes I have to stop and calm my breaths. Wipe my eyes quickly. Catch myself staring into the middle distance but not seeing anything at all but the memory of a touch, a sound, a sense of RD.

On Sunday my suspected DVT had me hopping around trying to massage out the pain in my calf at midnight. Yes, it was most likely cramp. But that wasn’t the most painful thing that night. Every time I managed to steal some sleep I returned to a thread in the dream. That was that RD had died in September but not properly. And so every time I relived him dying. Again and again.

It meant that waking up on Monday felt impossible. Impossible to get through. I was physically and mentally exhausted and it wasn’t even 7.30am. I don’t think I even realised my eyes were permanently damp until I had a brief debate about applying mascara. The debate was infinitely shorter than the rest I needed after getting my knickers on. 

I wondered if it’s like what the bends must feel like. That I was waiting for a decompression that wasn’t coming. Surrounded by a fear and a reality of death.

I sat bleary eyed in front of my computer, checking emails and data but watching the numbers and letters shift and sway. I went to put some figures into a folder, as I do weekly. And there it was 03/04/17. The wave of the fifth was coming. When I could score another line on my prison wall.

7 Dick Moves When Your Friend is Grieving 

I’m going to preface this with something: there is empathy, which is fricking marvellous, but grief, leave it to the grieving. The ones mourning death, ultimate loss.

If your sentence says “it’s like grieving…” or “it’s like grief…” or, actually least offensive “it’s a form of grief” I can resolutely, absolutely tell you it’s not. Give the real grievers their grief and back off. 

I’m also going to say I genuinely don’t judge our friendship around dick moves, because where’s the fun in that? And also, I’m not perfect and I have probably pulled off a gazillion dick moves myself. Like writing this list.

I’ve dealt with plenty of shitty, sad things. Feelings of loss. Despair. Fear. Let’s just be smart with the English language and its intricacies. Let’s allow feelings to be valid and not in some weird shit scale of oneupmanship.

I’m not being vague, there’s an article that’s doing the rounds. Has been for a while and I’ve tried to avoid it as I knew the ‘clickiness’ of the title was going to get me going. Grieving For A Child I Haven’t Lost

I don’t want to show off here, but being in the esteemed position of having both a profoundly disabled child, who then died, This. Is. Wrong. I’m not invalidating sadness, or loss, or how hard it is coming to terms with and raising a disabled child. 5 stars on my McDonalds badge in on this, I know. So, here goes, here’s how not to be a dick.

1) Let’s start with the most obvious. “It’s like a form of grief.” Nope. “It’s like grieving.” Yeah… no. I’ve pretty much covered it off above.

Would you say to someone with no legs; “I totally feel your pain. God, I get the worst restless legs a lot of the time. It’s so painful, and annoying.” No, because it’s a dick move right? Two, similar but dissimilar problems. Incomparable.

The article, the ‘grief’ is talking about the loss of experience, an expected future. All actually a false construct based on comparison. My son wouldn’t have walked, most likely, and now he DEFINITELY won’t. See? It’s no fucking construct. He’s dead.

I had a family member, at the party we held for RD to celebrate his life with him whilst he was still actually alive, find another, related only by marriage family member and have a conversation that went “every time my husband left me I was left to grieve again. It was like grieving every time.” The person she was talking to partner had died of cancer less than 2 years before. And she knew this.

Give her her grief, her daily grief.

Otherwise where does death leave you? GriefPlus?

2) Another thing that has me chewing bricks is when people lump together all the deaths of the people they know- and I’m talking indirectly here, not for people who have lost people very close to them in succession- because I know that’s a clusterf*ck right?!- and they make it a collective sadness for them.

Sadly, last year, RD wasn’t the only disabled child to die. But I don’t want him, or the other children, to be memorialised collectively. That that somehow could make it somehow sadder for those a bit more removed. ‘All these children’. One is enough, each and every time.

3) Assumptions. This is a hard one because part of empathy involves trying to put ourselves in the other person’s shoes. Which you know, is a good thing. Analysing what that might feel like before judgement of actions, this is good.

However, assuming how you might feel in that situation, and applying that framework to what the other person is doing, needs to hear, wants to see? Dick move man. Whilst going through this may give me some insight into what someone else may feel like if confronted by grief, I wouldn’t try to assume our experiences are the same, or our reactions should be the same. 

People in life are different, and the same applies to death. 

Best thing to do is ask. It’s not comfortable, and it probably feels stupid, but as long as you can accept that a) it might not make you feel any more comfortable and b) probably isn’t the whole truth, then we’re golden.

4) Silence. Sometimes a bedfellow to assumptions: “I can’t ask them that?!”. “I don’t know what to say”

Give it a go. It’s totally better than not mentioning it at all. Own your future balls up: chances are you’re going to get it wrong, but that’s okay. I’m pretty much irrational with all this sh*t anyway, so whether or not you’ve got it wrong may or may not be grounded in objective reality. 

Did you watch The Replacement or last week’s Inside No 9? Child loss even drove Will Smith crazy in that crap looking film, writing sodding letters to Helen Mirren or some shit. 

5) Trying to win an argument or ‘explain’ how they feel. That victory is f*cked up and entirely unnecessary. I’ll probably apologise anyway.

I’ve basically been looking for a reason to get everyone to agree to letting me win since I was 18 months old. I know this because I see the same struggle in DD. So I’m calling this one. For now…

6) Not letting them be angry. Pretty much the same as above. But it’s getting aggrieved at anger, taking it personally.

Essentially I’d like a free license to write a frigging list about being furious at stuff, and you can’t stop me. Because really some of it’s about you, but it’s really because I’ve got nowhere to funnel this fury. So I ask you to not get snowflakey about this or over analyse. 

7) Which leads to being unkind or unforgiving.

Don’t beat yourself up. Don’t beat them up. Accept that a crap thing has happened. Move forward without a grudge.

Give a hug- real or virtual. But, like feeding a gremlin after midnight, please don’t ever, ever, call me Hon.