We have two adult children with epilepsy. Both were adults when they had their first seizures, with no prior warning signs.
Our daughter’s first serious seizure was at the age of 29. She has only been hospitalized once with serious injuries, and her medication controls her seizures well. She doesn’t like that she has it, but it doesn’t rule her life, and only rarely causes her trouble.
For our son, it hasn’t been that easy. He was 32 when he began having seizures. He has had more difficulty with his, both in accepting it and in getting it under control. Since the first major seizure, he has woken up in the hospital with serious injuries many times, not knowing how he got there.
Two weeks ago, our son had a breakthrough seizure and fell in a concrete parking lot, fracturing his skull. He had a severe concussion, an epidural hematoma, and lost a liter of blood.
This son is a software engineer and an entrepreneur. He was employed by Amazon for ten years, and was well compensated during his tenure there. He had just started his own company, writing software. He was completely focused on this, and was working 12 to 16 hour days, and getting little sleep, which is very bad for him.
But being who he is, he didn’t realize he was courting disaster.
We live two hours south of where this son lives. We got the phone call at 4:30 pm and threw our clothes into suitcases. Running out the door, we called a hotel near the hospital, and made the nerve-wracking trip up Interstate 5 to Redmond, Washington.
During the harrowing journey north, we discussed his possible long-term care, wondering how he could survive such a terrible injury with his intellect intact, wondering how we could care for him if his motor skills were too severely compromised.
But in a four-hour surgery, a wonderful neurosurgeon not only saved his life, but saved his quality of life. He emerged from the experience with no brain damage, and no loss of motor skills.
Our son’s head-injury was the same sort of thing that killed actors Ben Woolf and Natasha Richardson. When you look at the way head head-injuries can kill otherwise healthy people, our son’s recovery is a miracle for which we are grateful.
Something intriguing happened with this incident. Our son has embraced life in a way he never has before. He woke up from the surgery in an incredibly different frame of mind.
Instead of wondering why this wretched condition has happened to him and focusing on the negativity of his situation, he is now looking at his life and appreciating it in a way he had not really done before.
When he left the hospital this time, his epilepsy was just something he has to deal with sometimes, and the rest of the time his life is good. His spirits are high and his recovery has been nothing short of miraculous.
If you couldn’t see the large wound on his head and the long, curving line of stitches, reminiscent of a baseball seam in the way the long scar curves around his temple, you would never know he had undergone brain surgery only 12 days ago.
He is full of energy and ambition, and though he does tire easily, he will soon be back on track and moving forward with his current project which he intends to have on the market before January.
Sometimes, we find ourselves going for a spin in the blender of life. We never know what will happen next, and we have no control over how life affects us. But through all of this, the community of our friends supported us, and faith carried us through the dark hours when we didn’t know what his future would be.
There is so much worse out there–things that make this epilepsy thing pale in comparison. We are praying for a dear friend in Australia whose young daughter is fighting for her life, dealing with terrible complications of flu-b, necrotizing myositis. Her prognosis is grave, and I know her parents are living in that land of fear and disbelief that I lived in for 24 hours.
We are supporting another friend here in the US, who is undergoing yet another surgery for kidney stones. What we have been through was scary, no doubt about it, but thanks to a wonderful neurosurgeon, it was nothing in the face of these ongoing life and death battles.
Epilepsy is a bitch, but it doesn’t have to rule our lives. Seizure incidents are inconvenient, and yes, we know they will occur when we least expect them. They can and will have a seriously negative impact on us. We know that the next time may not have such a good outcome but we can’t let fear ruin the joy and beauty that we have today.
The real news is not that our children have epilepsy–it is what happens the rest of the time.
We have five adult children with great careers and bright futures, two of whom also happen to have epilepsy.