Live Young, Die Happy

The universality of all our lives is that they will end. We will all die, no matter what hot cross buns tell you, it’s inevitable and forever.

We may not be aware of our own preconceptions of our passing, for most of us it feels distant. Sometimes touched by that bumpy plane landing, or an emergency stop. Or an illness that lingers beyond our tolerance.

There are times when the loss of someone feels out of order: too young. Be that in pregnancy, at birth, a child, someone in their thirties. Robbed of a chance before that chance even presented themselves.

The rest of my life, however it pans out, will be forever marked by the loss of my babies, and my five, nearly six year old son. It is burned into all my cells, my soul. It hurts, often more than I am able to withstand. But withstand I have to.

With RD, our choice to not continue treatment wasn’t us wimping out. We didn’t give up. My battles changed from external to internal. How would we live without him? I was still fighting, right up to his final breaths in our arms, as to whether we had made the right call.

However, I’m not writing this to question our decision over our son’s life. That’s not up for public debate. I have seen and read more than I need to about the high profile cases recently. Mostly from people who have decided “what I’d do in that situation” having never been in that situation. All I can say, is this is wrong. I wouldn’t even cast my view on what they should have done, it is their choice with the evidence they had.

What I want to write about is a positive death experience. By talking openly about choices for RD, perhaps the stigma around not apparently fighting tooth and nail against the worst news any parent could wish to receive will stop. Or at least lessen.

RD’s life had been an uphill battle from the start. The minute he was born, I felt such overwhelming passion for him. We loved him beyond measure. Yet, we spent many hours willing him to pull through. To get home, away from the claustrophobia of the hospital.

He blossomed, yet frequently his body failed him. We fostered and changed our outlook when his cognition and development only ever grew in tiny increments. We always pushed for people to see beyond his obvious disabilities, see his soul as bright as a new penny. This included medical staff.

There came a point, as dialysis failed time and again, where we couldn’t keep putting him through it. It takes time for dialysis to stabilise the blood, and RD couldn’t understand not to pull at his dialysis lines that made him itch. He just felt pain and irritation. Every few weeks they would become infected, need to be removed and re-sited. Which is only done under general anaesthetic.

This was a cost of survival that we knew would worsen, and most likely, take him to the operating table where his ability to get life threatening infections at the drop of a hat would mean that’s where he would die.

Not in our arms. Not happy and pain free, but scared and traumatised. We couldn’t explain it to him, lessen the trauma.

From the moment we agreed with the medical teams to stop the path of treatment, I felt only incredible sympathy from them. They had come to love RD too, his dancing to the tune that signalled the end of his dialysis session brightening everyone’s day.

The hospice helped us plan every eventuality, be that sudden death as his potassium levels went sky high, or, as we hoped and achieved, minimal intervention and a comfortable happy last few months.

We were in constant contact with the hospice. They stepped in to get his medication right, even driving back to the hospital to collect some of them for us so we, as a family, wouldn’t have to return. For anyone who has lived a life in and out of hospitals, waiting for medicines from the pharmacy to be able to go home, the impact of this simple act is huge.

As the body deteriorates, it begins to slow from bottom up. Your bowels, and then your stomach are often the first to be affected. So, we began reducing the calories and strengths of RD’s feeds for months. As soon as he looked or seemed like he was feeling sick, we reduced them some more. This is not starving him to death, it is carefully caring for his comfort.

RD had a run of months where he lived and loved everyday, arguably the best days of his short life were in palliative care. We also did as a family, free from the chaos of intense medical care. We still forged against our demons. Were we still doing the right thing?

In August, I even asked the hospice to arrange bloods to be taken, as RD was doing so much better than predicted. Perhaps we’d got it wrong? It does happen- we’d known that medicine is fallible from our lives in and out of hospital.

It was arranged away from hospital. They called in a second opinion from RD’s old lead consultant from Manchester. That consultant travelled to our house on a Sunday to talk openly and honestly about our choices. He was kind, and open to debate.

In RD’s final week at the hospice, where he only rested with a syringe driver delivering a frequent dose of midazolam, a powerful sedative, he was calm. We played him music as he took baths. We held him in our arms in the garden, a gentle breeze and warm sun on us all.

We were fed and cared for as a family. We were allowed to just be together.

When RD died, it was still unbelievably shocking and raw for us, but he left us with a soft smile on his face. He looked perfect and peaceful.

Our lives have to continue, and we have to adapt to the pain and heartbreak. We have taken that pain away from my son, and so, for us it is one worth shouldering.

*I also know this isn’t always the care that is delivered, and I’m sorry if writing this triggers negative emotions. I just want to speak openly about our choice and ensure that this is delivered consistently*

Motherhood, Physically

5 times I thought I was going to be a Mother.

That’s 10 pink lines.

Or probably over 20, because who doesn’t need to check again?

And countless single lines forgotten like spent matches.

3 live births. For the curious, that was 1 emergency caesarean and 2 VBACs. For the uninitiated that V stands for *whispers* Vagina.

2 children I have only ever parented at one time. A boy and a girl.

Unless you count the couple of weeks I held my dying eldest child in my arms as his baby brother was miraculously forming.

Sorry for the morosity but that’s how it was.

1 time I was presented my ever so tiny daughter that had only completed half her journey in my womb. She was brought to my drugged up body and arms in a bread basket, wrapped in a blanket the size of a dishcloth.

1 time I knew I was flushing my genderless foetus out to sea.

7 years of having a son with full care needs, although with every development milestone BD ticks off I know this will soon change. I’ll have my arms and my body back to myself again. No more cradling and lifting the full weight of a child. I crave this freedom and yet I will no doubt grieve this new loss.

Whilst all this marks a slightly unique passage through early motherhood, I am I assume, like so many others. Individual and yet not.

I feel maternal guilt, constantly. I crave my own space and yet never want to be away from my children. I shout more than I want, lose patience when I know I could do better and somehow wonder how I ever got this job.

Something that definitely garners attention is our bodies pre and post natally. Whether we ‘snap back’ or are still blaming it on baby weight three years later. Media attention on celebrities buttoning themselves back into skin tight jeans 30 seconds after leaving the hospital with babe in arms. I’m looking at you, Kylie Jenner.

Well, here’s me. 1 week after giving birth. I documented it not out of pride but because I knew what that weight loss represented. It told the story of anxiety. Of a pregnancy where I truly believed the outcome was another loss. Not slightly worried. Not able to rationalise with myself beyond a few minutes at a time. The thought that this baby would also die was bigger than me.

I would go to clinics and they would tell me there was a little concern of my lack of weight gain in spite of a huge bump.

“Are you looking after yourself?”

Physically, yes. I ate because I wanted this baby to thrive.

Mentally, not really.

“You know, if you’re still struggling once baby is here, you should consider speaking to your GP”

So then I wanted to show people I WAS NOW OKAY. Who knows whether I was or wasn’t. I was just bouncing from day to day, maintaining that eyeliner just so.

Nervous energy meant I didn’t sit down for long. Piles also didn’t help.

Flitting round the house, walking everywhere. Check on the baby, keep the house tidy, make sure DD was okay. Let’s go here! And there! Let’s be grateful the baby is alive and not miss a second. Just in case.

That weight loss isn’t a goal. I didn’t feel good. I felt weak and yet frenzied. I was short and impatient. So irritable and hormonal.

So as we hold others up as comparison, perhaps in person or their images foisted upon us on social media, we should think deeper. Be kinder to our own bodies and others.

Just recently I’ve started running again. I’ve tried and stopped in the 10 months since BD arrived. It hasn’t felt right. My head was too fuzzy, my limbs felt like overcooked spaghetti. And let’s not mention my pelvic floor.

Yet now, it suddenly feels right. I feel the electricity of power in my legs again. The peace in the sounds of the air, the time to pound, pound, pound through my thoughts with the occasional stop to shout for Eric.

I don’t really care what physical space I fill right now. I feel my core growing, my resolve returning, and my uninterrupted time to be with RD in my thoughts back.

10 Things I Hate About Grief

*otherwise known as what I have learned so far in the last year*

1) Did you notice the ‘so far’ above? That’s because I have learned that grief is not what I expected it to be. I’m not even sure what those expectations were to be honest. It’s just this thing that invades you, sometimes without notice, and you can just be going about your business and thinking things aren’t too bad and actually, you might be enjoying something again and then. Bam. The next day, your jaw aches. Your teeth itch. You feel like you’re catching the flu. You cannot be bothered to be a grown up but you have to.

So I have learned to try and accept that I have no idea what to expect and ride each thing out as it comes. The tiredness, the exhaustion though. That can do one.

2) That I love my children but I don’t always treasure every moment. I want to clonk their heads together and eat them for my tea because the very core of me wants to explode with love. You feel like that about your own too right? I do not need to tell you to hug them a little tighter and count your blessings.

The truth is, a lot of the time I also want to run a mile away from them and relish in solitude. I lose my sh*t with them and then sneak in an apology hug later. This is life. I don’t regret losing my temper with RD, or feeling the same things about my time when he was alive. He was delicious but he required very deep reserves of patience at times. Very, very deep… ones that I didn’t always have. 

3) That my mind constantly wants to justify the pain it feels. This means that sometimes I think some very odd things. Uncomfortable and unspeakable things. All I can do is acknowledge them as just that: a grapple to salve my soul and leave it there.

4) That I am changed. That in spite of best appearance I feel the old me caught in my throat when I talk. My spark is dulled, my anxiety about what people may judge of me is heightened. I question myself when I don’t talk about RD: am I being true to the fact that he fills my thoughts? I question myself when I do: does this seem like attention seeking?

I also worry about my Resting Grief Face. That I might seem rude, or disinterested. Or walk right past you and not see you. I’m only aware of it when I feel the wind change and I’m scared it might be stuck in that wrangled furrow.

5) That I am not changed but you may assume I have. I still love to hear, see and laugh about good things in your life. I want to be able to help if things are not so good. I still have a dark sense of humour, if anything, it’s even more warped now. I still love meaningless pretty things like tiles, wallpaper, good jumpers, crap telly and lipstick.

I am not saintly because my son died. I’m just like you but a bit more grief-y.

6) That sometimes it doesn’t feel right when you are described as strong. Really what it feels like is you’re just about keeping a cap on the crazy. I often think the worse I look, the more comfortable I’m feeling in my grief coat. I’m still not sure if that’s a good or a bad thing. However, I do always appreciate a compliment.

7) That just because I’ve experienced grief, I’m not that much better in the face of other people’s grief than I was before. I still stumble for words, worry about saying the wrong thing. 

So don’t worry about saying the wrong thing. Or not finding a way of sliding it into conversation.

8) That it makes people do odd things. In the face of this awful, awful thing it might seem like the only thing to talk about is that your newly oiled worktops are still a bit tacky.

One thing I’ve learned is that often the current action is just a reaction to point seven.

9) That there are just never enough photos. Never enough videos. Record the mundane and the extraordinary. Share them or don’t, whatever you prefer.

I didn’t ever take a photo on RD’s first day of school. I have photos of him waiting for his bus or taxi. Photos of him wearing a bit of token uniform. But I am still sad that I didn’t stop to do that. So now, with DD and BD I do, I will.

10) That now life goes on. It has a rhythm and cadence from young children that is familiar. Some days are just that, familiar and the loss feels background. Some days I feel like I can’t get around the house as it fills every room to the corners.

Sometimes I try to live in the moment and be grateful for all I have, fearful that still, something else might take someone I love away from me. However, I still need time to breathe and reflect on my own, as that’s the time I’m actually never alone, I’m back with RD.

So I’m trying to learn to be kind to myself. Kind to my husband, and his sock fluff on the bedroom carpet. Kind to my children and their demands, bum wipes and tantrums. And remember I’m not a saint.