D-Man is 18 Today.

My youngest son is turning 18 today. I cannot begin to count the years. His joyful spirit, insatiable curiosity, artistic talent and eye for the spiritual has left his father and myself deeply changed. I guess he’s finished with his job of raising us to be good parents. He’s an adult now. WOW. Am I ready? – nope.

And Some See Chariots

When my boys were born, I kept the baby monitors on full blast so that I could hear the slightest sound and run in, should they need me. When they were sick, I slept on the floor next to their crib. You might say, I was a zealous new mother. I don’t know who learned how to sleep through the night first, me or my boys. Even today, I still have one ear cocked just in case.

My youngest son has epilepsy. Dillon had his first grand mal seizure while napping in our bed at six-years-old. (If you don’t know what Grand Mal means, it’s where the whole body convulses.) He’d had a migraine that morning and we were resting. The seizure took me by total surprise and I called the paramedics in a panic.
I would try to sleep in our bed after that and would invariably wind up on his bedroom floor listening. I kept this pattern up for about a month, before finally letting go. A year went by before he had another seizure.

On Father’s Day 2000, I could hear Dillon hiccupping in the hallway. He had gotten up to sleep by the vent like he does on so many other nights. I got up to check on him and move him back into his own bed only something wasn’t right. When I sat down next to him to wake him up, I noticed that something was wrong. His eyes were fully dilated and when he saw me he got up with great difficulty. Using the right side of his body only, he began to crawl towards me. I grabbed Dillon and pulled him onto my lap. He had lost all strength on the left side of his body and his speech was slurred and slow. I’d thought he’d had a stroke and Jeff called 911.

The paramedics arrived pretty quickly, and said that he had indeed had a mild stroke, or TIA as they call it. And off to the hospital we went. CT scans revealed nothing except that, Dillon had not had a stroke, he’d a seizure.

What Dillon was experiencing was the after effects of a nocturnal frontal lobe seizure. His motor skills and muscle strength did return after a while. His memory of our family trip to Disney two weeks prior, did not return. The short-term memory loss was permanent.

Dillon had a dozen more seizures before Epilepsy was diagnosed. Even then it took months to get it under control with the right medications.

Both Dillon and I were afraid to sleep at night. My maternal instincts kept me awake listening for the slightest noise, so that I could run in and be there should he need me. I did not have the strength to sleep. My friends and I prayed continually for healing and for peace.
Every night our family would pray together that Jesus would hold Dillon while he slept and that God would send his angels down to watch over us and keep all of us safe. And we would try to crawl in to His lap for peace and comfort.

One night while we were sitting on our back porch swing rocking and singing together, Dillon asked me how I knew God would send his angels. I didn’t have an answer for him, so I lied. I told him I just do, that it was about faith. But he looked up and said, “No Mommy. How do you KNOW He will?”

What happened to the easy questions, like “Where do babies come from?” That one I had an answer for. So I said a quiet prayer for the right words to say.

It was one of those crystal clear Oklahoma nights where the sky just goes on forever, and I pointed at the stars and asked him what he saw. (My intent was to say if God can hang the heavens then surely he could send a few angels to watch over a child.) Dillon looked at the stars and said something only a child could say,

“EYES!”

“Eyes?” I replied. “I see stars.”

He said “Yeah Mommy, ANGEL EYES!”

With that he ran out to the middle of the yard, threw his head and his arms back and said, “Wow Mommy! Look at all the angels God sent to watch over me!” Then he gave me a quick hug and a kiss and ran back to bed, sleeping soundly for the first time in ages.

I did not run straight to bed and sleep soundly. I fell flat on my face before the God of the universe in my backyard and asked him to see what my son sees.

Elisha saw Chariots, Dillon sees angels and I am learning to see the hand of God at work in ways I never imagined.

And Elisha prayed,
“O LORD, open his eyes so he may see.”
Then the LORD opened the servant’s eyes,
and he looked and saw the hills full
of horses and chariots of fire all around Elisha.”

Dillon’s seizures remained in remission from 2001 to 2004. After finding new medications and treatments, Dillon has now been seizure free since October 5, 2008 and will be taking his drivers test next week.

Added: August 24, 20111 — I’m happy to report that Dillon has passed his driver’s test – first time out I might add – and is now driving. Something we never thought possible.

Fall Break: Letting Go Again

“Mom, could you please take your hands off the ceiling of my car? You’re freaking me out.” — D-man yesterday as he drove home from school.

I rode with my youngest for the very first time yesterday. He did great. I looked like spider woman with my arms splayed in every direction and my feet pumping imaginary breaks at various points of our 10 mile drive home from school. Learning how to drive is a rite of passage that I wasn’t sure D-man would ever have. He’s had epilepsy since he was six and until we got it under control, driving was a non issue. He hit his two-year seizure free mark on October 5. One more year, and we can buy life insurance. I am happy for him and sad all at once.

DH taught our oldest to drive, and I didn’t ride with him until he had his license. Because of D-man’s busy daytime schedule of high school and Vo-Tech, we are in the car a lot. It only makes sense that I  let him drive as much as possible even if it means my learning how to not hang onto the ceiling. While, I’m happy for him there is a real part of me that knows my baby is spreading wings, and I have to let go a little more. He’s a junior this year, and he’s already told us that he plans on leaving for Nashville once he graduates. Oh boy.

To keep me on my toes, our oldest called on Sunday to let us know that fall break starts on Wed, BUT he wants to go to Texas with some buddies for a couple of days and he’ll be home for the weekend. It seems there is this girl that he met through a friend – via Skype – and they are planning on meeting in person. Telling me he wanted to go to Cancun with his buddies for Spring Break would have scared me less than this. I was in a funk for two days. He’s 19, and he crossed state lines to meet a girl! sigh.

This is  a wonderful season for my guys. They are testing their wings, and as a mom I have to let them, even when I want to strap myself to their sun visor like some Saint Christopher amulet. We’ve raised them well. All I can do is keep creating a home worth coming home to – and good memories for them to keep in their hearts and trust that God knows the plans he has for them, plans not to harm them but to give them a future and a hope. (Jer 29:11) God doesn’t have grandchildren.

We gave them wings, guess I should let them fly hunh?

Living with Epilepsy: D-man has his permit

Pictures aren’t allowed. I wanted to take a photo of D-man with his permit, but he won’t let me. We got it yesterday. The permit that is. The licence will come in six months after he logs the hours and classes needed, as well as passes the state drivers test. 

It took longer than we wanted. He’d actually passed the written test in June. Then we had to wait on the neurologist to see us, file paper work and wait for the state to say yes. D-man had to be seizure free for a year before they’d let him drive. His last seizure was October 5, 2008 – I think we’re good. I’m excited for him and scared all at once. He’ll have to see a doctor regularly and have forms sent in for approval every year for the rest of his life — but he can drive. That is exciting.

Living With Epilepsy: Baseball

Suiting up and Showing up

It doesn’t matter that he’s never played before, neither has 3/4 of the team. It doesn’t even matter if the ball is coming at him at 70 miles per hour, he wants to catch. Turns out, he’s really good at catching. It doesn’t even matter that I have a thousand what if scenarios running through my head that put him in the hospital with my “I told you so’s” spilling out of my mouth. What matters is, he doesn’t want to be treated like a kid with a disability. He is a kid who wants to be a kid and unless I want to emotionally and spiritually cripple him with my own fears, I have to let him.

D has had epilepsy (ADNFLE) since he was six and is one of the bravest kids I know.

 He’s fought epilepsy, (16 months seizure free and counting)

 and he’s learning how to drive; standing behind a plate facing down 70 mph baseballs and runners twice his size ain’t nothin’ compared to that. So, I keep my what if’s to myself and let him be who he is, knowing that God doesn’t have grandchildren and that He holds my hands even when I’m watching my youngest play through my fingers in front of my face.

He even played third base.

Written by Deana O’Hara for Redemption’s Heart. All rights reserved.

For more information about epilepsy please see The Epilepsy Foundation.

To help fund research and find a cure please see their Research Funding Challenge today.

Six Months Seizure Free and the Freedom to Drive

Fire and Scales by Dillon O'Hara
Fire and Scales by Dillon O'Hara
Dillon's Pen and Ink Drawing for Art
Dillon’s Pen and Ink Drawing for Art

We’ve come a long way baby! Years ago,  epilepsy was a death sentence. They used to take epileptics to the city gates and stone them to death. We’ve grown from that to denial of rights.  50 years ago, epileptics were looked upon with fear and trepidation. They were denied jobs, houseing, and the right to drive. With good reason I suppose – at least on the driving aspect – if the seizures were not under control anyway. My uncles lived through a lot of unfair and prejudical behavior because of their seizures.

One was bi-polar on top of having epilepsy and commited suicide: throwing himself off the Peace Bridge in Buffalo when he was 36. The other died at 17 by mixing whiskey with his phenolbarbetol. Not having my uncles to learn from or to talk to is hard.

Epilepsy is a dirty little secret that no one in my family talks about. Until now. I refuse to label it dirty, and I refuse to keep it a secret. My son has seizures and I wanted to know why. I also refuse to allow this bump in the road to limit him.  Laws are changing. People with certain types of epilepsy are allowed to drive, provided of course that their seizures are under control. With the advances made in medicine, controlled epilepsy is probable and achievable.

Dillon has ADNFLE – or Autosomal dominant nocturnal frontal lobe epilepsy, a very rare genetic disorder that is only now being treated properly. In the past, ADNFL patients were treated as psychotic disorders. These types of seizures can range from mild to  violent in nature and occur while sleeping or just before awakening. They were believed to be night terrors or part of a larger psychiatric disorder.

ADNFLE patients do not typically test well, which is probably why we had such a hard time with finding the right medications and a proper diagnosis. The EEG’s and MRI’s tend to come back normal. The only way to capture a truly abnormal EEG is to undergo a sleep study while wired for sound and hope he has a seizure during that time. It took two studies to finally capture his seizures on tape. Seizure activity can be dormant for months at a time, and rarely if ever during the day.

Dillon’s diagnosis went from it is epilepsy to we have no clue, for years. The spans of no activity and the palsy like side effects in the morning threw our doctor off.  It wasn’t until we went to the Children’s Hospital in Fort Worth last summer, that we knew beyond a shadow of a doubt that it was epilepsy and what kind. I’ve also found out there is a name for that muscle weakness he some times experiences. It is called Todd’s Palsy.

These are things I did not know before this year. But they are things I know now and I’m happy for that.

Today is a very special day in the O’Hara household. Dillon has reached his six month mark of being seizure free for the first time in over six years.

What that means is  Dillon gets to learn how to drive and he could not be happier.

Epilepsy Claims Celebrity Son (Sad Blog Warning)

This news report absolutely ripped my lungs out today. It hit a little too close to my heart and my deepest fears. John Travolta’s Son was found dead Friday. – John’s son Jette was only 16 and had epilepsy caused by a childhood illness when he was two. Jette apparently had a seizure in the bathroom and fell and hit his head. Autoposy results are pending.

Epilepsy isn’t supposed to be a death sentance. I know it can be. I know there are strands – rare strands – that are. But still. This one saddens me. And this is the second case I’ve heard about in just two weeks. One from my sweet friend in England who lost her baby girl to Wests Syndrome and now this story.

There are days I wish I didn’t have to remind Dillon to take his meds. There are nights I still jump up out of bed because I heard something, and find nothing but a sleeping child. There are days when he asks me to teach him how to drive, and I have to say not yet – six months seizure free and then I can teach you. And I feel, not quite pity, that’s not it, just kinda sad for him. If that makes sense.

And then I hear stories. I talk to Fi’s Mom about how we might finally have this undercontrol, having no idea they are fighting for their daughters life that week – and she loses – and I feel guilty even though I know I shouldn’t. I had no way of knowing. I knew they were in and out of the hospital, but I didn’t know how bad it truly was.

Please keep the Travolta’s and Fi’s family in your prayers this month.

Thanks.

ps.. for those who are wondering about Dillon’s Diagnosis – I never did post it – you can find more information here (ADNFLE). Thanks. I’ll write more about it later.

In the Face of Angels and Chariots of Fire.

2 Kings 6:15-17 (NIV)
“When the servant of the man of God got up and went out early the next morning, an army with horses and chariots had surrounded the city. “Oh, my lord, what shall we do?” the servant asked.

“Don’t be afraid,” the prophet answered. “Those who are with us are more than those who are with them.”

And Elisha prayed, “O LORD, open his eyes so he may see.” Then the LORD opened the servant’s eyes, and he looked and saw the hills full of horses and chariots of fire all around Elisha.”

Elisha was outnumbered. The enemy laid in wait from every side, and yet he wasn’t afraid. His servant? Well that was a different matter. It wasn’t the first time that Elisha had chariots. He was there when his mentor Elijah (2 Kings 2:12) was taken up in a chariot of fire. He knew they were there – and he prayed that God open the eyes of his servant that he might also see.

Sometimes we miss the chariots that surround us – sometimes God uses the faith of a servant/child to open our hearts to the possibilites of faith. Open the eyes of our hearts Lord, that we like Elisha may see your chariots.

When my boys were born, I kept the baby monitors on full blast so that I could hear the slightest sound and run in, should they need me. When they were sick, I slept on the floor next to their crib. You might say, I was a zealous new mother. I don’t know who learned how to sleep through the night first, me or my boys. Even today, I still have one ear cocked just in case.

My youngest son has epilepsy. He had his first grand mal seizure while napping in our bed at six-years-old. (If you don’t know what Grand Mal means, it’s where the whole body convulses. Pretty scary stuff. ) He’d had a migraine that morning and we were resting. The seizure took me by total surprise and I called the paramedics in a panic.

I would try to sleep in our bed after that and would invariably wind up on his bedroom floor listening. I kept this pattern up for about a month, before finally letting go. A year went by before he had another seizure.

On Father’s Day 2000 Dillon woke up with slurred speech, short term memory loss, and substantial muscle weakness on the left side of his body. The paramedics said it was a TIA or “mild Stroke.” The neurologist called it “Epilepsy” which really just translates to “seizure disorder.” or more simply put “Out of Mom’s Control.”

I don’t think so.

Both Dillon and I were afraid to sleep at night. My maternal instincts kept me awake listening for the slightest noise, so that I could run in and be there should he need me. I did not have the strength to sleep. My friends and I prayed continually for healing and for peace.

Every night our family would pray together that Jesus would hold Dillon while he slept and that God would send his angels down to watch over us and keep all of us safe. And we would try to crawl in to His lap for peace and comfort. Everyone, in their own beds, and no sleeping on the floor.

One night while we were sitting on our back porch swing rocking and singing together, Dillon asked me how I knew God would send his angels. I told him I just do, that it was about faith. But he looked up and said, “No Mommy. How do you KNOW He will.”

What happened to the easy questions, like “Where do babies come from?” That one I had an answer for. So I said a quiet prayer for the right words to say. How do I explain that I heard that prayer somewhere – I had no idea if it’s real or not, or where I heard it. I just did and thought it was cool.

It was one of those crystal clear Oklahoma nights where the sky just goes on forever, and I pointed at the stars and asked him what he saw. (My intent was to say if God can hang the heavens then surely he could send a few angels to watch over a child.) Dillon looked at the stars and said something only a child could say,

“EYES!”

“Eyes?” I replied. “I see stars.”

He said “Yeah Mommy, ANGEL EYES!”

With that he ran out to the middle of the yard, threw his head and his arms back and said, “Wow Mommy! Look at all the angels God sent to watch over me!” Then he gave me a quick hug and a kiss and ran back to bed, sleeping soundly for the first time in ages.

I of course, did not run straight to bed and sleep soundly. I fell flat on my face before the God of the universe in my backyard and asked him to see what my son sees.

Elisha saw Chariots, Dillon sees angels and I am learning to see the hand of God at work in ways I never imagined.

It is so easy in today’s world to feel outnumbered.
Feeling isn’t the same as real.
Sometimes we need our eyes opened
Sometimes we just need to look for chariots.

(February 10, 2014) – Dillon is seizure free today – five years, six months, and counting.

And Elisha prayed,

\”O LORD, open his eyes so he may see.\”
Then the LORD opened the servant\’s eyes,
and he looked and saw the hills full
of horses and chariots of fire all around Elisha.”