Everything and Nothing

A year ago today, I felt the world shift imperceptibly to the left.

I went into RD’s room in the morning, but he wasn’t awake. He’d been a little unsettled during the night, but had fallen asleep on his bedroom floor mid play in the wee hours. I went to lift him up into his bed, where he stirred slightly. I saw then that the side of his face was swollen, in particular, one of his eyes was partially shut from the fluid around it. He was floppy and cranky, and I felt that burn of knowing. Knowing something looked like it had changed slightly and yet underneath all had changed fully.

Eyes didn’t sparkle as much. A smile was difficult to form. He was agitated but too tired to cope with it. He didn’t want to play with anything.

By the afternoon, I’d had to administer midazolam: a very potent sedative. It was in our emergency pack of medicines. I’d spent years tinkering with pain relief when RD was unwell, but this was a big change. Nothing else would touch the sides of his discomfort. It worked, but only temporarily. By nightfall, he’d had his second dose. By 10pm, the hospice had called an ambulance to come and get him as I’d rubbed his fourth dose into his gums. Because that’s how you give midazolam. And yes, it is as horrific as it sounds.

He lay in my arms twitching, and resting fitfully as Wolf ran around trying to pack their stuff together. DD was asleep in bed, so we agreed that he would travel in the ambulance to the hospice with RD and in the morning I would drop DD at my parents and join them. I was torn in half. I lay him carefully on the stretcher, answering questions, a quiet panic brewing. Knowing that he wasn’t going to come home, grasping at vestiges of hope that he might. And yes, that was as horrific as it sounds.

All of this still feels like yesterday in a different lifetime. In less than a week, it will be the anniversary of his death. 

How a year has passed, I don’t know. Falling pregnant with BD, and wishing away the time until he was safely born eradicated a large part of the year. Looking back, a lot has happened, a lot has changed and yet, RD still feels part of it all. I am petrified of reaching the anniversary, because then what? I’ve relived so much in this year, he’s stayed so present.

In my mind it’s like when you go to the opticians. When they slide lenses into the test glasses, and you have to say whether it’s better or worse. After a year, I feel like the lense is going to make things a little more blurry. The year after, a little more blurry still. The clarity of memory forever altered.

I went out this morning and tried to run away from the funk of these memories. To seek solace in fresh air and breathlessness. I thought about the association we attach to things: dates sit as having importance. Good China for special meals. Clothes for best. But these individual associations will mean nothing to the person next to you.

So next week, on the fifth, I will want to feel like the world has to stop. Just for a while. It won’t though. DD will be doing her second afternoon at school. I’ve planned a little way to mark the anniversary but no doubt nothing will go to plan- we still have a dog, a four year old and a four month old. What’s that adage: never work with children or animals?

I’m going to wear some of my clothes kept for best. We can eat off the fancy plates. I’ll take DD to school, we’ll get the dog wormed. All on this day that will feel like it means everything and nothing all at the same time. And hope it won’t be as horrific as I imagine.

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Nobody Puts DD in the Middle

I am a middle child. I can boast many of its finer characteristics, such as attention seeking, strong will and a low level resentment towards my siblings and their superiority in birth chronology.

I am different to my siblings. They are different to each other and yet possess similar abilities to do well at school and never get in too much trouble. These are things I didn’t do so well at. But it’s okay, I’m creative (not always meant in a complimentary way).

DD is my second born, but as soon as she came into our lives I knew she’d be a middle child someday. I knew she had the feist and pizzazz to own it. She is a thousand kinds of fabulous and a massive pain in the arse. My Dad has described her as “A mini you. Actually, no, you on steroids.”

She came second in line, but achieved so many firsts for us. She quickly overtook RD, and made my mind boggle at how quickly she grew and changed. Each time this came with a little bittersweet taste but we revelled in the normality.

For DD, her understanding of her big brother went against her understanding of size and time. By 18 months she was bigger than him, and began to help us teach him. Although the time she tried to get him to sit up by pulling on his gastrostomy tube was definitely an unorthodox method.

She was too young to remember that she was due to be a middle sister before. I still often wonder what my other little girl, Tiny, would have been. What whispered secrets and games they would have invented, just three years between them. Whether she would have been such a force of nature, or allowed her big sister to lead the way.

The bookends to DD’s middleness don’t match. We lost and gained in one fell swoop. More than that, its difficult to explain, and for DD to grasp where she sits between her brothers. It’s something that she’ll no doubt find difficult to articulate as she grows up too.

In less than a month she starts school. Like her mother, she’s not backwards in coming forwards. She will answer questions or talk about RD with a fierce honesty. She is proud as punch about BD whilst stealthily trying to break his arm.

I suppose, just like a classic middle child.

But you DD, whilst classic, are extraordinary to your Dad and I. Our constant. Our apex.

Tired

I started to complain to my husband about it the other day.

He told me to go on the internet and complain as that’s what people do now.

So here it is. I’m tired. Exhausted. Knackered. Shattered.

And it’s doing my head in.

I want to feel some get up and go. Some wind in my sails. I’ve got this itch to be the active person I am in my head. To do a juice cleanse or some shit, but I’ve still not popped to the Co-Op for my milk yet.

I’m trying hard to give myself a break though. When I’m scooping baby sick out of the turn up of my jeans or using fairy liquid to try and remove the baby poo stains out of vests, baby grows and playmats. (Second fact is a top tip by the way. It really works)

It’s when I realise I’ve been a mother for seven years. Seven. And yet my oldest living child is four. Even if RD were still alive, his development hadn’t really progressed beyond a year anyway. So any chance of the mantra “it gets easier” hadn’t really happened yet. I have been a mother to very young children for seven years.

Thankfully RD had developed enough that he could entertain himself. In fact, if it weren’t for the nappy changes and vomit catches, he was such an easy going soul. Most of the time. But it had taken him about two and a half years to get to that stage.

In the relentlessness of it all, there’s a bigger beast to bear. Sometimes, it’s boring. Actually, a lot of the time it’s boring. My brain is filled with calculating getting us all up and dressed. Fed. Getting the washing on. When the next nap will be. What I’ll do in that nap. The frustration of that nap happening on me mid feed whilst DD has a meltdown from lack of attention. So actually I did sweet FA.

Four O’clock. When bedtime seems so close and so achingly far away and I’ve no idea how we’re going to get to it. I still need to go to the Co Op for milk. The dog needs walking. All the day I’ve fantasised about painting my skirting boards, alone, untouched. I stuck a bit of masking tape down when I probably should have gone to the Co Op.

What’s really exhausting though, is grief. It churns away, burning at your energy reserves. Even when I feel like I’m not actively engaging with it, it’s ticking, aching, invading each thought process. Every activity I do, it says “remember when…” It alerts me to his absence.

The clicking on of the kettle: Do you remember when you had to sterilise all RD’s feeding tubes and syringes at least three times a day? Opening the cupboard for a teabag: Do you remember when that cupboard over there was filled completely with medicines, and now it just has calpol? Going to get the milk out the fridge: Do you remember, oh shit, you forgot to go to the Co Op didn’t you?

Here I am complaining about the boredom. Grief says “remember when you had to raise a newborn by a hospital bedside? Remember all that you lost, how can you complain about being a Mum?” Grief, is a dick.

There was a period of time when I had the energy I want back. I mean, yes, it was fuelled by a desire for peace and to indulge my inner introvert, but I ran two marathons. I worked nearly full time. I was kinder to my husband. His breathing in the car didn’t make me want to punch him. Somehow, I will hopefully wend my way back there.

The grief will just have to come with us. But like my young children, I hope it quietens down a bit and behaves itself.


 

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.

We Could Be Heroes?

This is something I’ve wanted to write about, but will admit to being scared. I’m not scared about expressing my opinions or my words, but because of the exposure to the hungry beast that is social and traditional media. Sitting, ready to pounce with vitriol. Opinions begets opinions. I have watched from the sidelines as more people have said “I can’t imagine what the parents are going through” or starting comment with “if it were me.”

Well, I can imagine. And I know what we decided in our unique case. That’s the crux here: conjecture is based on evidence presented and comparisons to other unique cases. Yet no two incidents are the same: there may be similarities in conditions or questions over treatment, but ultimately we humans are individuals and this is so prurient in the case of rare disease.

So why write this? This post is in solidarity. In having experience, so I write this to post into the ether with the hope it may bring some comfort.

When RD was tiny, when he just wouldn’t grow, wouldn’t tolerate feeds, and every step forward was met with one back, I fought to find hope. Strength. Optimism. It was clear that he was in pain: for all sub 3 pounds of him he could silence beeping machines and alarms with scream after scream. He would vomit across the room. 

I was petrified. My first born son was alien to any other baby I’d met. But every fibre of my being, every synapse of my body tingled with love for him. I willed him to improve, in spite of mounting evidence of poor prognosis. Yet, I was also scared for him to live if the pain would continue. 

The evening of Boxing Day 2010, we arrived on the neonatal unit. I scooped RD up from his incubator, he let out an ear piercing scream and covered me in vomit. The sobs heaved from within me. We were living a life I could have never imagined, I didn’t want it anymore. I couldn’t grip onto the traces of hope and optimism. So I asked RD to show me. Show me he could do this. I whispered into his tiny neck, show me.

For reasons beyond my understanding, he did show me. It wasn’t down to different medical intervention. In a month he’d tolerated feeds and put on weight. The treatment for his kidneys seemed to have worked unlike any other case they’d seen and therefore one prognosis- that he would need albumin infusions multiple times a week- proved incorrect. The doctors were wrong.

RD left the neonatal unit for home after four months. Again, we had been told that this was unlikely. In that time, in the endless stretches of minutes sat at his incubator and then cot side, I had run every emotion. I had crested peaks of elation at improvement, battled despair when it felt like things were unable to get worse, felt gratitude beyond compare and the last one, anger. Such anger, at how unfair this all was for RD. For us. And every time someone got it wrong, I channelled that latent, useless anger at them. Doctors, nurses, professionals. 

I couldn’t always see that they were just other humans, trying to put together their best evidence and experience and forge a way forward. Hospitals are fraught, noisy and busy. You feel as though you are the only case that should matter, blocking out the hundreds of insular crises happening around you. That’s the only way to get through. To survive as the bystanders to the one battling for their life.

In his five, nearly six years, we had with RD he fought against medical prognosis but our fears about lifelong disabilities became actualised. I had many conversations where I had to reel off all the list of things RD he could do, that he loved, so evident was it all the things he couldn’t. In that time we truly came to understand what quality of life looked like. RD’s label of life limited never left him though. In spite of appearances, his condition was deteriorating.

When we tried renal replacement therapy, and it consistently failed, it took me right back to the start of his life. Constant hospitalisations, where he was utterly miserable. At first I fought off any suggestions that the kindest thing may not be to continue. Anything else felt too awful to contemplate. 

When we really looked at the picture in front of us though, I tried to think how RD was understanding this, being that his understanding was different to ours. We had come to learn that whilst RD could clearly react to discomfort and pain, or complete happiness, he couldn’t anticipate either. He reacted to what he was presented with at that very moment in time.

After another fraught night in a side room with RD, where he couldn’t be calmed from the pain he didn’t understand, I asked him again. But this time I realised he’d already shown me. The one thing I know though is it wasn’t giving up on him, it wasn’t letting go.

For us, RD’s lifetime was too short. I would still give everything to have him back, but only if I knew he would be happy. Truly happy, as he was when we stopped invasive treatment. I will live everyday missing him.

But for RD his lifetime was just as long as it lasted, and he left us with the balance of happiness versus discomfort swinging heavily towards happiness. He knew he was loved unconditionally. His short years were full for him.

I don’t know what I’d do in any other instance. I do know how it feels to fight, and I also know how it feels to gracefully step down. Both feel just as heroic.

The Unscratchable Itch.

“Mummy, what are you doing?”

(I am helping colour in her picture. I always figure that even though DD won’t understand what I’m saying yet, I go with the full explanation)

“I’m shading in this bit with a darker colour, to make it look 3 dimensional”

“Oh okay. Mine looks like three dalmations too”

“Mummy, can we go and sleep at the hospice again soon?”

“No sweetheart. We can go and visit, but there’s no need to sleep there any more, we had sleepovers when RD was poorly and when he died, but now it’s for other families to have sleepovers there”

“But what about when BD is more growned up? When he is poorly”

F*ck.

Life currently sits somewhere between endless monotony: feed, wind, comfort, change nappy, repeat and mania: crying (both children), undone shoelaces, elbows dug in, me saying NO. Swearing internally, or in hushed tones behind kitchen cupboards. A smell of baby sick barely discernible but constant. Waiting out jealousy tantrums.

My mind is seeking out to busy itself, in this half bored, half crazed and sleep deprived state. And I am the very person that knows that these days are long but the years are short. I have that as a low level soundtrack playing, waiting to kick up the guilt that sometimes I AM NOT LOVING EVERY MOMENT.

There is so much to love, and I inhale it deeply. My daughter’s sense of humour, twiddling her hair and singing the songs from Trolls on its billionth and one airing in our house. Pudgy fists grabbing at me, smiles and gurgles from my glorious lump of a newborn son.

There is a void though. It feels a little like my insatiable breastfeeding thirst and hunger. Permanent and sometimes cloying, spilling over into rage about unopened bathroom windows, and decorative trays being used as dumping grounds for the excessive amount of stuff emptied from my husband’s pockets.

I can’t fix it with a new kitchen floor, but it might help. Painting RD’s room, so that it can blend into a slightly altered space for BD feels important, and yet impossibly hard. Not just because BD is clingy and needing fed on a regular cycle. Busy busy, trying to scratch the itch. Scraping at some control. Running away from myself and yet into myself and the memories of last year. Of the last five years.

Pushing myself to get out and walk and walk. Where I am free from being touched and demanded upon. Where RD lives in the breeze clearing my mind, so I can be with just him.

I’m not daft though, the end of the route needs to involve cake. That helps.

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.