Grace To Endure

Let me introduce myself. My name is Kathy, and I am a mother to a 35-year-old epileptic son. A little about Stephen – he was born with Rhino Nasal frontal encephalocele. Encephalocele is a rare congenital condition where the neural tube does not close and causes a sac-like bulge that pokes through the skull. Children with encephalocele are at risk for seizures.

The soft tissue was removed when he was 6 months old. Stephen had partial seizures in which he would blank out for a couple of minutes. He was assessed at the age of 5 and was moved to a brilliant school which specializes in his condition.

Stephen had his first grand mal seizure when he was 13. The theory that should seizures occur before age 13 he would outgrow it…that was just a theory.

It was incredibly difficult to accept the diagnosis that Stephen wasn’t able to join the workforce. It’s understandable that as a mother, you want to fight for your child’s future and well-being. The hope and determination you have for him are powerful, and while the diagnosis felt like a setback, it didn’t define his worth or future possibilities.

It has taken 3 decades for me to submit to the Lord and accept that I am not in control.

Proverbs 16:9. “A man’s heart deviseth his way: but the LORD directeth his steps.”

Stephen was assessed by a brilliant specialist who thankfully wasn’t the type of doctor who just wanted to operate. We were given the option of removing the part of the brain where the seizure activity presented. But due to the activity being so deep in the brain this wasn’t a viable option. The alternative was the Vagul Nerve Stimulator. The device was implanted in his chest and sends intermittent shock impulses to the brain.

Stephen had this for 5 years until the device stopped working. He made the decision not to have it renewed, as the constant zinging impacted his sleep and it didn’t have much of an impact on his seizure activity. Believe me if I tell you there isn’t anything out there that we haven’t tried. We are granted grace to endure the ordeal, knowing that Gods’ grace shines forth.

2 Corinthians 12:9. “And He said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me.”

2 Corinthians 12:10 “Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ’s sake: for when I am weak, then am I strong.”