It was a beautiful summers morning as we all awoke in a caravan on the west coast of Scotland.
You were awake first, as you always are, and I sat with you watching CBeebies on the TV while you played one of your games on your iPad.
Nothing seemed different. You were making your usual noises and flapping happily.
It was looking like yet another very warm day and I was planning in my head what fun we would get up to. Would we get the paddling pool out again, or go for a swim on site or have an adventure in the surrounding area? We had already been here a week and everyone was so happy and relaxed.
Once dad and your sister woke I started breakfast. You requested your usual sausages and mash and beans and I was happy to accommodate. I dressed your sister and gave her breakfast as you sat in your usual spot with your iPad in your hands about to eat.
Suddenly we all heard a bang.
It was loud and sudden and I turned from the kitchen to see your iPad on the floor. I saw the iPad first and you second. I thought you had dropped your iPad and you were picking it up. Then I quickly realised you were lying on the floor.
I thought you had fainted so immediately pulled the table away.
Something was off. Seriously off.
Your back was arched, your body stiff, your eyes flickering.
I bend down to be near you. Your arms were shaking though stiff and rigid. Your head was almost bouncing off the ground. Stiff. Rigid. Lifeless yet shaking rigorously.
‘He’s fitting’ dad shouted.
Your sister screamed.
I sat over you silently.
The shaking increased and got quicker. Your head tipped back and your eyes rolling. It was like watching everything in slow motion.
Quick thinking, your dad began timing it.
Your sister curled into a corner of the couch with silent tears running down her face, rocking with fear and panic.
I wanted to be with her but I couldn’t leave you.
Your mouth was foaming, your arms thumping rhythmically off the ground, your legs shaking.
Time fell silent.
Frozen in fear.
What was happening to my son forever etched in my memory like a horror film on repeat.
At what point to do you call for help?
Then I noticed blood.
I had already grabbed a nearby towel to try and protect your precious head as you banged it continually unconsciously against the floor of the caravan.
Blood was now oozing out of your foaming mouth as I realised you had bitten your own tongue mid seizure.
You had been silent up until now but suddenly you were moaning and doing a sort of half cough half wrench and I was terrified you were choking on your own vomit.
‘Stop it Mum, stop it Mum. I can’t watch any longer’ came the screams from your traumatised sister in the corner.
Except I couldn’t stop it.
I couldn’t make you better.
‘That’s two and a half minutes now and counting’ said your dad as he continued trying to stay calm whilst his only son was mid seizure with blood and foam coming out his mouth and eyes now staring blankly ahead.
I remember the neurologist mentioning 5 minutes.
We were half way there.
The vibrant shaking was slowly easing. Your arched back now beginning to straighten but the seizure wasn’t finished yet.
For the next minute or so you writhed in pain and distress, shaking as if so cold on one of the warmest days of the year.
Your eyes fixed and dilated. Now in the recovery position your body exhausted but still slowly shaking and your wrenching as if about to vomit continuing.
White as a sheet, a shadow of the child who had been sitting waiting for breakfast just ten minutes before.
It ended as suddenly as it started. Like someone instantly pressed the stop button.
Just like that. Over.
One final cough and that was it. You lay there breathing deeply eyes now closed exhausted thoroughly from what turned out to be a four-and-a-half-minute seizure.
I knew you were ‘high risk’. You had had smaller seizures before but nothing like this. Ten days prior you had been diagnosed with epilepsy and were due to begin medication when we got back from holiday.
That Wednesday everything changed.
Four and a half minutes that felt like a lifetime.
I will forever be grateful to the amazing epilepsy team who have supported us and to my son’s neurologist.
Severe nonverbal autism, neurofibromatosis type 1, vision impairment and epilepsy are a hard combination to live with.
You have had a few seizures like this since but thankfully medication is helping.
Thankfully, because we are still dealing with the trauma that four and a half minutes left on us all.
Epilepsy is much more than seizures. It’s living with the fear, the trauma and the heartbreak of seeing someone you love go through minutes of hell and you can’t do anything to help.
It’s awful for everyone.
Four and a half minutes. Not long really but forever when it’s happening to you.