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.
What it really feels like to have a child with epilepsy? 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?