WHAT IT REALLY FEELS LIKE

Epilepsy - More than just a Seizure -Julie Clark (Mum)

What it feels like…to have a Child with Epilepsy

I really knew nothing of epilepsy prior to having my son Lewis 18 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 every day and you cannot take it away from them.

Then there are other factors like Hemiplegia and Autism PDD-NOS involved you are dealing with more illnesses. This continually exacerbates matters.
Contraindications of seizures and epilepsy.

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. Now it’s the Transition to Adulthood. Another tumultuous area.

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. Hes not normal! Include him everyone? I want to scream…No school plays. He is not contagious! It hurts so much and hard to see and comprehend.

Now maybe others are just scared? They maybe just do not know what to do? I wanted to shout it is epilepsy! He’s not contagious you will not catch anything.

Invite him to a party, just once please. Invite him to a friend’s house. It just never happens.

He had no childhood. He knows nothing other than mum and Hospitals. Tests after Tests. Drug after Drug. Trial after Trial. Then the Hemispherectomy of the Right Parietal Lobe due to uncontrolled seizures.

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. The complacency and the ignorance never goes away.

Some are lucky the seizures are controlled and they can lead as much a normal life as you and I. 30% bracket have refractory seizures like my Son and not controlled by the AED’S. The drugs only suppress the seizures don’t cure them.

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. We need people with  epilepsy to speak out.

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 hes 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 Enigmatic Son.

Against adversity he fights this horrible condition called Epilepsy.

One day at a time. It’s all we can do.

2018-07-22T01:28:56+00:00