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.


*Thankyou for all the wonderful donations so far.

If anyone still wishes to donate, or share this post, or this link, we would be so grateful

http://m.virginmoneygiving.com/mt/uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=MichaelDimelow&un_jtt_redirect

*

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.

Spring in my Step

I wake up tired. I try and forge through the day heavy lidded and achy. A tiredness routed in my very bone marrow until I eventually fall into bed at the first moment it seems socially acceptable for a fitful, need to get up to wee every hour semi-sleep. Lather, rinse, repeat.

You’d think the start of Spring would bring the feeling of fresh renewal, but in our world it’s the start of anniversaries of difficult memories. Well, more difficult anyway. When the scales tipped and kept on tipping, the runaway train of despair, hope, loss of hope. Facing decisions that felt like all roads would lead somewhere worse. Holding on, just trying to hold on.


And somehow we’re still gripping onto the sides now. The reassurance of a scan getting us through for a bit longer before the clawing worry starts to bite again. Trying to find space in my mind to let in the feeling like this might be okay, whilst not wanting to believe it in case that moves me too far from my grief, and therefore my love, for RD.

See, there’s the headf*ck. There’s a sense of knowing in my grief. I talked about it last time, this weight inside that is real and hard, but a connection to my son and the massive shape he has knocked out of me by leaving. And I don’t feel any need to fill it with anything, because there is nothing that can or will. And I get annoyed at the bits gnawing at the edges. I guess in time I will just make more space, and that’s what I’m trying to work on right now. But it’s exhausting.

The longer days do bring a sense of renewal, the glorious yellows and oranges of daffodils reminding at every turn of his bright light and colour but they’re also taunting. Their grayscale has been turned up. I squeeze my eyes shut and remember that getting through the next few weeks and memories of failed dialysis and life threatening episodes, of searing realisations and pain, get me to the start of summer when although making an unenviable decision lead to the most glorious love filled, long, intervention free days. 

That this coincides with reaching the point of our pregnancy on the cusp of joy and excitement but simultaneous huge, huge fear, well, I need to give myself a break on the tiredness front. And squeeze my eyes a little bit tighter to see the speck of hope returning.


Probably the best illustration for how life is for us right now. The above is DD’s latest entry in her memory book for RD. He is one of the shapes around the rainbow- also featured are a car door, chocolate coins and a kite. Obviously.

Today I Fell

Yesterday I got that call, the one from school, the one that makes your pulse woosh in your ears. DD had used her forehead as a braking system, unfortunately she chose a large, heavy bookcase to assist with that. She’d been unable to cry for a full minute as the pain was so immense, as the teacher watched the cartoon like egg bulge from her head, minus the blue birds. I needed to go and get her, then take her to get checked over.


The dog had also not had a good day. He’d done a lot of whimpering and retching but not really producing anything. We’d been trying to see if something actually came up whilst also ushering him off the soft furnishings in case it did.

On Sunday I’d had to call my mum. The only person I knew who would be able to help with the screaming agony of my haemorrhoids. It’s not the done thing to mention them in polite society, but I thought I was going to go blind with the pain. And whilst I have the ability to go from zero to overly dramatic in less than sixty seconds, I do think I have an okay pain threshold. I won’t go in details, but the pain did lessen, and so DD and the dog and I spent the afternoon lounging in bed, recovering.

Essentially, I could feel my seams unravelling. That distinguishable ping of fabric and muscle as my physical state, and that of those around me muddying my mental state. Letting in the grief too much after being wearied from pain and unable to keep pushing forward and through. And with it a lack of control and fear. 

Today, in the car to the train station, bound for the South Coast for work, I fell to my knees whilst sat in my seatbelt. Big heavy tears brimmed at my eyes. Throughout the early hours of the morning my usual busy tummy, all kicks and jabs and rolls had felt to still. Too fluttery. I just couldn’t go, I couldn’t leave. Not if something was going to go wrong with this baby too. By leaving I was going to lose something. DD, the dog, the baby, even Wolf despite nothing being obviously wrong with him. I was mainly going to lose my mind.

We turned around, I phoned the hospital, deposited everyone back at home and headed straight to the labour unit. Calm enough to make the necessary phone calls whilst feeling like every nerve fizzled. Taken into a room, a pink strap, a blue strap, lie back.


Badoom. Badoom. Badoom. Like a cool wave over me, the strong and steady waves of the heartbeat. The kicks and swipes at the monitors pressed against my stretched, taught belly. Left alone with a button to press for every movement, I barely stopped pressing it, the bout of hiccups made for a particularly frantic picture: the horizontal lines on the CTG trace practically on top of each other. 

I fell again. I let go. Let the tears fall quietly, slowly turning the pillow and hair behind my ears sodden. I told the cold blue walls that I missed RD. That without him I was so, so scared. I knew what I’d lost, him.

It’s been two years since I’d last fallen this way, in the freezer aisle in Sainsbury’s, when the smacking of the door in the back of my head whilst trying to wrangle some fish fingers from the furthest space in the freezer had me walk zombie like back to the car. Suddenly, whilst sat behind the wheel, I couldn’t move. I couldn’t drive. For everything was going to go wrong. Given the amount we’ve dealt with in those two years, I think the innings are okay.

Afterwards, slightly Bambi legged and confused by what happened, and having apologised to all and sundry for my invisible grazed knees, I feel exhausted but free. A little dizzy, but glad the door has opened and spilled. Because then I can shove it all back in a bit and carry on, and I may just have found a bit of what I lost when I was there.

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.