My Two Boys

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

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

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

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

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

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

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

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

Advertisements

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.

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.

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.