By Julie Clarke, Erskine.
I really knew nothing of epilepsy prior to having my son Lewis 15 years ago.
Having a child with a serious form of epilepsy which is uncontrolled is one of the most ambiguous neurological illnesses to deal with. You feel helpless. You see your child suffering and you cannot take it away from them.
When there are other factors like Hemiplegia and Autism PDD-NOS involved you are dealing with more illness. This continually exaberates matters.
Your life is not your own anymore. The explaining to family and friends exhausts you so you stop explaining.
There very rarely is a week without any hospital appointments or interventions. There are countless meetings with Education Departments/School., making sure all is implemented for safety and well being of your child in school.
Self preservation kicks in. You have no family unless you’re very lucky to have them support you. Friends leave like ‘Elvis has left the building’ you’re on your own. Isolated!
Oh no, forgot my mobile, need to rush home school might call! Then you get that call, you stop instantly wherever you are whatever you’re doing immediately – thinking the worst. Most times it is school just not coping, so you step in and take over.
Your child is not invited to birthday parties at school or from anyone to be precise. They are isolated. They are alone – they take these funny turns. Include him everyone1? No school plays. He is not contagious!
Now maybe others are just scared? They maybe just do not know what to do? I wanted to scream it is epilepsy!
You cannot catch from him for goodness sake! Invite him to a party, just once please.
He had no childhood. He knows nothing other than mum and Hospitals. Tests after Tests. Drug after Drug. Trial after Trial.
Having a child with a neurological condition like epilepsy the most loneliest of journeys ever. Only another parent in similar circumstances truly understand what you are going through. The stigma never goes away.
Some are lucky the seizures are controlled and they can lead as much a normal life as you and I.
Some like my son are not so fortunate. What is the definition of normal I ask? He needs 24/7 care. He will never live independently. He is vulnerable in this often so cruel world we live in. The ignorance from others and lack of understanding on epilepsy is not much better from years gone by. We as the parent/carer try our best to educate others on epilepsy. We need others to know about epilepsy.
You source, you read every bit of information you can, you gain as much knowledge and insight as you possibly can. You ask the clinicians question after question. You want answers. You want your child well.
You just want someone to take epilepsy away. Make your child well and stop them suffering repeated seizures. Why is there not more being done? You go through every emotion humanly possible.
You as the parent; regardless of how many times you see them in seizure, you never get used to it. My way is to detach myself, it is the only way I know how. You never know when administering the rescue medication, will he survive this one? Will his organs take much more?
He has bit his tongue the blood is running down his chin.The ambulance comes; you dial in between making sure breathing ok, place him on his side. The operator talking to you because he is unconscious, your head is in a whirl. The ambulance crew arrive. Stay and check observations; heart rate high, blood is ok. He is stabilised so we all make the judgement he stays at home in own surroundings. Better that way.
He sleeps for hours, sometimes sick with a really sore head upon waking and he is out of sorts for few days. He is off school; so many people to contact, appointments possibly to cancel and rearrange elsewhere. We are both stuck in the house for days.
These are our 4 walls inside our home having my son with Intractable Epilepsy. Meanwhile all around us carries on; some have seen the ambulance, they know something is wrong with Lewis, oblivious to the seriousness of epilepsy.
He goes to bed tonight runs high risk of SUDEP ( sudden unexplained in Epilepsy )
Maybe he will be fine tonight? No seizures! A big ask…
We are in our own little world, but it’s ok they know us here!
My happy boy, My Enigma despite it all, a smile for everyone.
Still waiting on that knock at the door!
muirmaxwelltrust.com provides practical support and free epilepsy alarms to families in the UK. Help us reach our fundraising goal of £250 000 so that we can continue our work. Visit us at charitycupcakechallenge.com. Follow us @beatepilepsy and like us on Facebook.