Epilepsy. The day our son was born, he convulsed continually. Virtually every day since, he has suffered from seizures that medication can not ease. From the day he was born we have been told repeatedly that he will not survive. Initially, beyond that first night, and then on several occasions since as his health has continually suffered.
We need to take these warnings serious as he is clearly at high risk of SUDEP. Sudden and Unexplained death in Epilepsy.
As each seizure become worse. Torturing his body and punishing his mind. Side effects from each seizure making his life a misery. A painful and upsetting misery that we are helpless to do anything about, other than to be there and to support him throughout each day. We talk with his specialist team about the changes and seek help and guidance from them. We know that we have run out of options to help him medically. Over 35 years we have tried many combinations of anti-epileptic drugs, each combination making things worse for him. Epilepsy remains a condition that is still not fully understood and lacks enough focus and investment as with many other conditions.
Focal onset seizures, Focal to bilateral tonic-clonic seizures, Focal aware seizures, Focal awareness impaired Seizures, Generalised onset seizures, Clonic seizures, Absences, Gelastic seizures, Myoclonic seizures, Tonic and atonic seizures … we have learned so much about them all, how to spot the symptoms and what action to take. That learning does not do anything to relieve our son from suffering, only ensures we never leave his side.
We do not know what our sons future will hold. Nobody does. The reality is that God could decide our son has suffered enough and will take him to him to be with him today, tomorrow, next year. All we can do is love him in the time we have and ensure he understands he is loved and to fear nothing.
As a parent, the anxiety of worry is very wearying and lies heavy on our shoulders, but even this is nothing compared to the trauma our son goes through daily.