The Colour Purple

Helen Horn by Helen Horn Additional Needs

Helen Horn

Helen Horn

I am mum to two young men. My eldest son James, who is 27 years old, has a diagnosis of Wolf- Hirschhorn Syndrome and Autism. On my blog I write ab...

The Colour Purple

I Love flowers. Purple ones are my favourite. The colour purple is often associated with royalty, extravagance and grandeur. Dark shades are said to inspire power and strength while lighter shades are hopeful and optimistic. Psychologically purple inspires harmony, mental balance and stability.

There is a day to wear purple and this year it’s26th March.

Purple day is a day chosen to educate and raise awareness of epilepsy around the world. It was initiated by a young lady called Cassidy Megan following her own struggles with epilepsy.

My family has also been touched by epilepsy. My eldest son James who has Wolf-Hirschhorn Syndrome had his first seizure when he was 17 months old. He’d had open heart surgery just a few months before and I was home alone bathing him. He was still tiny as growth retardation is characteristic of his syndrome. As I held him in the bath, he suddenly became rigid, his arms and legs outstretched. I don’t remember him making any sound or even any movement. I had never seen anything like this before and in my naivety didn’t consider that he could be having a seizure.

I wrapped James in a towel and I ran downstairs with him. I ran outside and I banged on my neighbour’s front window. My neighbour, a mother of three herself, wasn’t home but her young teenage son was and he called an ambulance. My recollection is vague now but I think my other neighbour arrived back home as the ambulance arrived and she came with us to hospital. She stayed with me until my husband arrived. He was working, on call as a gas service engineer, I don’t even recall how I got hold of him. We had no mobile phones 25 years ago.

Over the next few years James continued to have regular seizures. I say regular, they were every 4/6 weeks, not many I know compared with others who endure many every single day. We had emergency medication for him at home and I guess we got as used as you ever do to dealing with them as and when they arose. You adjust to living with the knowledge that it can potentially happen at any time, especially when James was unwell.

We then enjoyed many seizure free years.

I had hoped that was an end to that particular episode of ours and James’ life. But no. With no warning on15th Feb 2019 James had another seizure. I wasn’t home. My husband and younger son were with him and at the time and I met them at the hospital. As James hadn’t had a seizure for so many years the ambulance took him in to be checked over.

No specific cause was found for this reoccurrence other than James had been on some different medication which had completely thrown his sleep pattern out of kilter. He was exhausted and falling asleep at all times of the day. We felt this had lowered his threshold and hoped it was a one off.

All was well for a further two years, then another seizure, this time without any justifiable explanation at all. Eighteen months passed and then James had two more seizures in an eight-week period. So here we are now as he is coming up to 28 years this year and he has started some daily epilepsy medication. I had hoped it would never reach that point but here we are. It’s still early days and after a very gradual increase of medication over the last few months he has just reached the advised dosage so it’s very much a wait and see situation and hoping we have things under control.

Here’s hoping on March26th (and every other day) that purple will indeed bring peace, harmony and mental stability to my family. I will have to find something purple to wear.

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