Riley’s Seizures and Our Purpose In Life

March 1, 2021 by Kristy

Our oldest son Riley, has a rare form of epilepsy named Lennox-Gastaut Syndrome (LGS).  Basically as seizures increase so does Autistic like Behaviors.  To get this diagnosis you have to have certain brain wave patterns on an EEG, you had to have all the different types of seizures and you also have to have intellectual regression and lastly I believe that all of these symptoms have to occur during childhood.  Riley was a very difficult child, well his whole life but the ages of 13-17 were brutal.  So much so, that we felt like we had no other choice other than to place him in a care facility for people with mental and physical disabilities.  It was our least worst option available.

All options… sucked! His disease was destroying our family life. James and I have always had a good marriage but our exhaustion from Riley was straining our relationship. Our other children were 4 and 5 at the time Riley went to the care facility, they were not getting the Mom and Dad that they deserved and were entitled to. Riley hated being at home, being at school, being anywhere, other than going for rides in the car.

The first couple of months after Riley was admitted to the care facility I spent a lot of time in bed, catching up on sleep (which I have been told is impossible but I say B.S.).  James worried.  It felt like he worried more about Riley at the care facility then he ever did when Riley was home.  Slowly, very slowly we started to have confirmation that we did the right thing.  Riley was progressing and our other children were getting the attention they deserved.

We are coming up on Riley’s 8 year anniversary of him living at the care facility.  We haven’t abandoned him.  We get him every Saturday and on Holidays.  We also go to his doctor appointments and anything else we are invited to attend.  It really has been the best possible option and we are grateful that placing him in a care facility was an option for us.

Breakthrough Seizures

Riley’s seizures are mostly under control.  He occasionally has, what are called breakthrough seizures.  Meaning that despite medications he sometimes still has seizures.  Yesterday during our 4th of July Barbeque, Riley had a breakthrough seizure.  It was a drop seizure, meaning that he literally drops down to the ground and begins convulsing.  His breathing is very shallow and he loses the look in his eyes.  I don’t know where his spirit goes but from the look in his eyes, it leaves his body.  Weird I know.  But it is also heartbreaking.  There is not a dang thing I can do and sometimes, when they are really long, like this one was, I don’t know if he is going to come back to us.

 After about 6 minutes he looked at me and I knew he was back.  He instantly falls asleep and sometimes will sleep for hours.  In this life we all have challenges and obstacles to overcome.  One of my challenges is having to watch my son live a life I didn’t plan for him.  I would never wish epilepsy, Autism, Bi-polar or mood disorders on anyone.  But I know that this life he has to live he chose.  It was the only way a lot of people, including myself would learn patience and empathy.  Riley is the undisputable, best teacher in the entire world.  Just ask anyone that knows him.  I have come to terms with his disabilities and challenges and it has motivated me to help others like him and the families.

It is James and my goal to build care centers for people like our son.  We will have the best staff to implement healthy foods and we hope to improve the lives of those who have to suffer through these difficulties.  This is our purpose in life and we know that all things are possible.