My Secret Little Demon

YOUR WORDS

I have a story to tell. A story of guilt and responsibility.
A story of my secret demon who’s walked by my side for 15 years.

A demon I’ve seen less and less of as the years have passed, but one who has no problems sneaking the “This is your fault you know” at opportune moments. A demon I’m ready to get rid of.

So here’s the story of how we met.

I had had a healthy pregnancy, tired of course, back brace from 28 weeks (I was massive!) but healthy.
At 39 weeks I could handle the crushing weight of twins no longer and after a 30 hour failed labour, my beautiful boys were born by C-section. One 8lb, the other 5lb 13.
Only weeks after their birth did I realise this late stage deviance in birth weight between twins was a problem.

Maybe if I’d educated myself better, things would have been different.

The boys were born healthy, feeding, crying, generally being babies.
Then 2 days later, on the Tuesday, Ben stopped feeding.
I told the midwives, I was dismissed. Tom was feeding well and I think they just got muddled.
By 10 pm I was getting desperate, I asked and asked for formula. He just seemed too tired to feed.
At 2am, 2 midwives spent 2 painful hours trying to physically force him to feed. I fell asleep crying.
The following morning I asked for formula again, I was discouraged. I was told he had fed in the night and that if I moved to formula I wouldn’t be giving him the best start.

At 3pm we were discharged. I was ill, Ben hadn’t fed properly for over 24 hours but we were sent home anyway.
I could give details of the conversations I had with those medical professionals but that wouldn’t be appropriate. The long and short is I was sent home with the words “every new mum panics, trust me, your baby is fine” ringing in my ears.

I was one of “those” new mums it seemed, you know the ones who over-react and panic at every little thing.
That night Ben didn’t cry, he didn’t ask to be fed. At 11pm I called the midwives service.
“Don’t worry, but if you’re still worried in the morning call your midwife”.
Around 11am the following day my little boys hands and lips turned blue, he was twitching, zoned out. I called 999. I didn’t care that everyone was telling me he was ok, I wanted an ambulance.

They arrived in minutes and we were rushed, lights flashing, to A&E.

What followed is a daze. I was ill. It turned out later that I had a massive infection and severe anaemia, which I’m sure added to my inability to process what was happening. Or maybe my brain just wouldn’t let me.
You see I didn’t realise how devastatingly ill my little boy was. How stupid can a clever woman be?

When there were 4 doctors working on him in A&E, I noticed but I didn’t realise. When a nurse left the cubicle crying, I noticed but I didn’t realise. When we were later transferred to the children’s ward and were given a private room, I noticed but I didn’t realise.

My little boy was given multiple drips, I couldn’t follow what for. His blood sugar was immeasurable, I didn’t know what that meant. He was on oxygen and hooked up to who knows what.
About 2pm they took him to the treatment room, while I was feeding his brother, to put another line in. They were gone an hour, I noticed but I didn’t realise.

Then the doctor came in. They’d called in a senior consultant. She was on her way. They couldn’t get a line in, his veins had closed up. He was hypothermic and his blood sugars were still immeasurable.
“Is he going to die?” It wasn’t me who asked, it was his Dad, I still didn’t realise.
“I’m afraid your son is very poorly and at this age most babies don’t have enough strength to fight back. I think you should come and sit with him, he could pass at any moment”.

Then I realised.

Then the world stopped turning.
Then my senses stopped working.

I sat with him for hours whilst they were treating him, I wouldn’t even leave him to go to the toilet.
They told me he may need to be intubated, but he would have to be transferred to Birmingham and they didn’t think he’d survive the trip.
I couldn’t eat, I couldn’t drink, I was ill and in shock.
Shortly after midnight I must have fallen asleep.

I woke to the sound of alarms going off, the room filled with people. And I knew, I was certain I knew, what had happened, my beautiful boy had died whilst I slept. I wasn’t there with him for these last few hours because I fell asleep. Pathetic.

I lay still, so still. If I moved people would see I was awake, they would tell me what had happened and it would all become real. If I never moved again, it would never be true.
Then I heard someone say something, I can’t remember what, but I remember thinking, they wouldn’t ask for that if he had died.
I was up like a shot.

My little boy didn’t die that night.

The following morning he was stronger, 10 days later I took both my twins home for the second time. Before I left I was given a clear warning, due to 36 hours of seizures and oxygen deprivation, I should prepare myself for severe learning difficulties.

2.5 years later he was discharged with completely normal development, 15 years later he is sitting his GCSE’s along with his brother, and if he doesn’t get great results then it will be to do with teenage boy syndrome rather than anything medical.

That being said, the last 15 years have not been trouble free. He has suffered many serious and some lifelong health complications, the details of which will be his story to tell if he ever chooses to.
We have travelled more often than we should in the back of an ambulance, he has woken up too many times in a hospital bed. And some of these issues are, on a balance of probabilities, a result of how poorly he was all those years ago.

And you know what that means. I caused this. It’s my fault that he has had to overcome challenges every day of his life.

And here’s where we meet my demon.

I should have known that a birth weight differential means a twin has most likely been malnourished. Then I could have made sure he had the correct monitoring regime.
I should have insisted on formula when I first worried he wasn’t feeding properly, then he wouldn’t have got poorly or at least it would have been obvious how little he was eating.
I shouldn’t have let the doctor dismiss my worries and discharge me, then he would have had instant care available.
I should have insisted the midwives let me bring him back in when I was worried.
I should have called 999 sooner.
I should never have fallen asleep.
It’s my fault.

Every time he faces a challenge, it’s my fault. Every time he has been poorly, it’s my fault. Every tablet he has had to take, every hospital bed he has slept in, it’s my fault.
And as for his brother, every seizure he has had to witness, it’s my fault. The burden of responsibility he feels for maintaining his brothers welfare when they’re away from us, it’s my fault. The anxiety and worry he sometimes feels, it’s my fault. How close he came to losing his twin, it’s my fault.

Guilt has been my constant companion and he’s reliable that’s for sure, always there when I look for him, he never let’s me down.

For years I couldn’t even tell this story, the guilt was overwhelming. Then as time passed, as I became stronger, as Ben became stronger, the guilt retreated. Still there but only partially present.
But at a recent hypnotherapy session, when I was asked to go back to the time I felt most guilty about something, I was right back there. I was in that hospital room trying hard not to move, and the guilt was overwhelming.
It made me realise that it’s time to let it go.

The truth, however, is that no amount of hypnotherapy, no amount of friends telling me it wasn’t my fault, no amount of positive affirmations, no amount of denial will ever change how I feel, that it was my fault. That looking back there are things I could have done that would have changed the future. That I could have made things different.
I can’t let go of that, I don’t want to.

This responsibility has made me a different person.

I will never let anyone dismiss my concerns again which has meant future issues have been dealt with swiftly and effectively. On the one occasion they tried, I did whatever I needed to be listened to, and you know what, I was right. Mums instinct is rarely wrong.
I have shared my learnings with other parents who have felt dismissed and know of at least 2 children who were diagnosed and treated as a result.
I learn my sons conditions to such a level of detail that paramedics have asked me if I’m a medical professional.
No one will ever make me or any one I know, feel stupid because they think something is wrong with a loved one.

I don’t want to let go of that, positive things have happened as a result.
But the guilt, now that’s got to go.

I don’t have a quirky story about how I’m going to do it, but telling this story is the start.

The fear of others judgement has kept it hidden and by hiding I’ve given guilt free reign. My little demon has moved in and made himself comfortable, but I’ve booked the removal van and he’s getting evicted!

You see responsibility and guilt are two completely different things. Responsibility is a positive emotion, it drives you to be better, to never let the same thing happen again, to learn.
Guilt on the other hand is the opposite, it limits our ability to grow, to be happy, to be all we can be.

So if you have something you are carrying, something that you hide deep inside because the guilt is too heavy a load to bear. Maybe you did have a part to play, and like me you have struggled to separate responsibility from guilt, then join me now in booking that removal van and get that secret demon out of your life for good!

My Secret Little Demon was originally published on Jo’s blog Your Best Life. Please check it out for more of her musings about life and do get in touch with her if you feel moved by her story, as I did. Thank you Jo for sharing your story. x

1 Comment on My Secret Little Demon

  1. Thank you for sharing this incredible story. You saved your boy’s life when you called the ambulance, you were responsible then for that as you have been for his survival to this day. The idea of separating the guilt from the responsibility is a powerful one that I will take on board. I hope the removal van is a success! Thank you again.

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