Don’t call me super mum. I am not OK and that’s OK.

We are our own worst enemy. The hard time we give ourselves over things out with our control is worse than anyone else could give us.

Regularly people tell me I am a supermum, superwoman or that they couldn’t do what I do daily, raising a child with a variety of health needs and disabilities.

While it comes from a good place, and I’m sure it’s meant as a compliment, all this does it exacerbate the sense that I shouldn’t feel the way that I do sometimes. It perpetuates the myth that we all need to be strong and 100% in control of our mental health at all times. Its unhealthy, and it leads to a barrage of emotions and inner turmoil we should have to keep locked up for fear we may appear weak.

2 weeks ago, Hannah had a huge seizure which required 5 different rescue meds. She seized for 86 minutes and was moment away from being intubated again and placed in an induced coma to get the seizure to stop.

I held the space for her while we were in resus, administered some of her rescue medication while the doctor held her airway open. I remained calm and steady throughout despite a team of up to 15 medical professionals fighting to keep her alive.

One holding her in a jaw thrust to keep her airway open, others trying to place a cannula on a fitting child, watching her shoulder pop in and out of place and hoping as each medication was administered that this was the one that would stop the seizure. I watched a few times as she visibly stopped breathing, her chest flattening and staying completely still for what seemed like an eternity until her incredible will to live kicked back in and she started breathing again.

When the seizure stopped and Resus was calm again the doctor told me that I was amazing, calm and that I could work for her anytime.

Here is the reality – This isn’t the first time that I have witnessed Hannah in this position, in fact it’s been more times than I can count or recall. Almost 5 years ago the seizure never stopped and she was on life support for 5 days. This was her first serious seizure and it left me with PTSD, I was pregnant at the time it happened with Molly and I went in to shock in the resus room and they made me leave.

After that followed a period of anxiety and PTSD which I sought help for and worked through so I could continue supporting Hannah on a daily basis. But PTSD has a way of rearing its head and my trigger is , for very obvious reasons Hannah’s seizures.

I quickly learned that being hysterical while Hannah’s life hangs in the balance in resus doesn’t help anyone. It doesn’t help me who needs to hold the space for my daughter who is fighting to stay alive, it doesn’t help me who has to administer very heavy duty medications to a seizing child and who needs to feed all the information to the paramedics and doctors so they can treat her properly, and it doesn’t help the doctors who need me to be coherent so they can get the right information from they need and that they can focus on her not a hysterical parent.

Believe me, my calm exterior betrays how I feel inside. My heart is pounding and I have a lump in my chest, right in the middle below my throat a knot builds and builds until I feel like my own airway might close. My hands are in fists to stop them from shaking.

In the most recent seizure I was also multi-tasking, texting my husband telling him to get to the hospital asap and ask my sister to come and sit with our other children, keeping my mum (in another country) up to date, while constantly communicating with the strangers saving her life.

Supressing even the tiniest bit of emotion and staying steady.

“If she has got this, then so do I” is what I kept repeating inside my head.

And then the seizure stopped, the immediate threat was over and the staff buzzing around whittled down to just 2, a plan was made for transfer to a ward and we were passed the danger zone. I left her with her dad and went to phone my mum.

Then the tears started, but not little ones. A big ugly sob where I felt I couldn’t catch my own breath as I turned to my own mum for comfort over the phone. “Why her?”. “Why does someone so little have to fight such huge battles?”

All that holding space for Hannah came out as did the memories of our previous experience, as images of potential scenarios play over and over.

What if they couldn’t save her?

What if this is her last ever seizure? Not because she is cured, or the daily medication works, but because she is dead?

PTSD doesn’t always allow you to rationalise those thoughts, it’s compounded in fear, what ifs?, anxiety and emotion. It’s raw and in the moment and makes you feel very very lost and question you’re own ability to cope.

But then another feeling emerges that I never expected – Guilt.

Not guilt for her seizures or the life she leads. Guilt for having PTSD.

We are our own worst enemy. The hard time we give ourselves over things out with our control is worse than anyone else could give us.

Hannah’s seizure happened on our 10th wedding anniversary leaving the bottle of champagne we had been hoarding for ten years still in the fridge, plans for a nice dinner left hanging.

She was in hospital for almost a week which also happened to cover my own birthday.

I started to feel sad that I was spending my birthday in hospital looking after my sick child, that it wasn’t fair and didn’t feel at all in the birthday spirit.

Then I started berating myself for feeling this way. How dare I feel so sorry for myself, when other parents spend their birthdays like this, or worse without their children because they have outlived them.

How dare I suffer mental health problems after witnessing Hannah’s seizures when it’s her who has to physically endure them, It’s her that’s left in pain for days afterwards as her muscles ache and her throat hurts and her skin is raw from allergic reactions.

On top of PTSD I was further beating myself up for feeling the way I did until I gave myself a good talking too. My feelings and fears are real. Hannah’s battles are real. I am not super mum.

My first day back at work after Hannah came home I felt teary all day, and whenever anyone asked if I was ok or how Hannah was I mumbled something incoherent and fought the tears back. I made it harder on myself because I was worried about what people would think if I was an emotional wreck. I was an emotional wreck and yet I was still beating myself up that I shouldn’t feel this way. I needed to be strong but I didnt feel it in the slightest.

My manager asked if I would be ok. I said I was “fine” so he asked me again. I told him through tear filled eyes that I would, but it was going to take me a little time.

So these are my new mantra’s when I feel like I’m holding it all in

It’s ok to not be ok.

It’s ok to feel the way you do, It ok to cry and say it’s shit and feel like the entire universe is against you.

It’s ok to hate epilepsy and feel angry that your child has to fight such huge battles and feel annoyed that epilepsy doesn’t care about dates or occasion.

It’s ok to understand that the effects of seizures are not limited to the person physically experiencing them.

There’s a good chance that the doctors and nurses also had to somehow deal with the effects of watching Hannah fight so hard. They may have left the room and also had a cry

They may have missed an important event or ran over their shift end time because they were also fighting to keep Hannah alive, you don’t just clock out halfway through a medical emergency because your shift ends.

My shift never ends.

I am there, 24/7, every seizure, every trip to resus and every night as I tuck her up and pray that she will still be whole when she wakes in the morning.

That I won’t sleep through a seizure and miss an opportunity to save her life.

I am not supermum, I am fallible, I get it wrong. I live in constant fight or flight mode and when my phone rings when Hannah isn’t with me I take a second to mentally prepare myself for what could be about to come.

I am good in a crisis, but I feel it hard afterwards and I am actively working on giving myself a break. It’s ok to have PTSD , it’s ok to not be ok.

I will not feel guilty for feeling so deeply everything we experience. I will not harden myself to the point I don’t care. The reason I feel so deeply is because I care so deeply.

I am not supermum, I am human.

People who say they couldn’t do what I do? They could. You have to. You have no idea how you’ll cope until it’s your only choice. I can’t crumble because Hannah relies on me being ok. So I’m going to stop feeling guilty and deal with what I need to.

I’ll cry when I need to, I’ll rely on my support network and say “I am not ok”.

I’ll feel what I need to feel at a time that’s appropriate and not beat myself up for that release

And I’ll keep going because as long as Hannah has to fight her battles then I’ll be right there beside her holding that space for her and guiding her through. I’m just so lucky that I have others doing the same thing for me.

Right now, I am not ok. I will be, It will just take some time and a realisation that I need to stop being so hard on myself

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Author: Rebecca Pender

Rebecca Pender is based in Glasgow, Scotland and one of her many hats she wears is mum to 3 young girls under 6. Her eldest daughter Hannah has an extremely rare genetic condition called Inv Dup Del 8p. She also lives with epilepsy, brain abnormalities and a learning disability. As a family they refuse to let any diagnosis or struggle define what they can or cannot achieve, they may just have to improvise the plans. A graduate of the internationally recognised Partners in Policymaking programme, a leadership programme for parents of disabled children and disabled self advocates, Rebecca is a huge champion of disability rights and is determined to break down barriers for disabled people in areas like inclusion, collaborative care with health providers and social injustice. You can follow her on Facebook and also on Twitter.

One thought on “Don’t call me super mum. I am not OK and that’s OK.”

  1. Love you Rebecca! Thank you for sharing. I cried through the entire reading. It sucks! It just sucks and that’s the truth. I cry a lot and feel the same way at times….guilty. You 8p family is with you….always.

    Liked by 1 person

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