Category Archives: epilepsy

There are no buckets on my bucket list

We promised our son we’d take him fishing for his 21st birthday.
We drove 12 hours from Tulsa to Galveston to do it.

I got to the marina in the morning and asked the first mate where the facilities were on the boat.
bathroom He said if you open this door in the front of the cabin, you will find a bucket with a toilet seat lid.

I have a broken leg.

I love my boys

I really do.

Just not enough to pee in a bucket

with a toilet seat

in front of God and everybody.

I made my husband take me back to the hotel.

They had more fun without me.

They caught trout, sheeps-head, and shark without the trauma of seeing mom try to pee in a bucket with a broken leg.

And bonus – I got to pee alone

in my hotel room.

It was a win/win day.

 

Please Help Me Turn Google Purple For November.

My son was diagnosed with epilepsy in 2000. This petition to turn Google Purple for November was started by Tiffany Kairos and I’m supporting it. Would you please take a moment and sign your name. It’ll take less than 60 seconds. Thanks.

 

November 1st is Epilepsy Awareness Day! Epilepsy affects over 3 million Americans of all ages. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

We’re asking Google to have their homepage represent Epilepsy Awareness this day to encourage the millions who use Google each day to learn more about epilepsy awareness and become involved in helping find a cure. Also, for the millions worldwide who suffer from epilepsy, it would shine a bright light for them to let them know that they are thought of!

Click on the link below to add your name.

TURN GOOGLE PURPLE FOR NOVEMBER

 

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.

Summer Life with Boys

firecracker

Dear readers: Today’s post is more tongue in cheek than my usual fare. Being home with teenagers this summer is both a joy and well, strange. A lot has changed now that my youngest is 16 and my oldest is leaving for college. Long gone are the days where I could read about 101 fun things to do with your kids over summer break and they would humor me for a day or two. Those ideas never worked anyway on my boys. No, my boys want adventure, they want daring, they want food, they do not want cutsie crafts and nifty games with tin cans. They want to hunt, gather, blow up things and chase girls. Me personally, I just want a nap.

Times have changed, have they not? This photo above – shows two young boys getting caught shooting off firecrackers. Today all a family has to do is march down to City Hall and buy a permit for $20 and you are allowed to play with things that have the potential to blow off fingers and more. 

Let’s face it, boys are born wanting to blow up things, watch war movies and ask for bacon for dinner.

At least mine are. Granted they are 16 and 18. Blowing up Army guys, watching movies like Defiance or SAW and having Bacon and Eggs for dinner, is for them the perfect guy day.

Problem is, I’m a girl in a house full of men.  I don’t like any of those things. If I had my way, we’d be planting a vegetable garden or going to the museum, or something safe. Jeff warned me that if I did not allow the boys to be boys, I would “permanently scar their psyche.” As if the scars they received from trying to toboggan over the creek while it was partially frozen last winter aren’t bad enough I have worry about emotional scars as well.

Let’s face it, for the sake of my sanity I’m pretty much a don’t ask, don’t tell kind of mom when it comes to this guy world. I won’t ask what you’ve been doing and you don’t tell me how high the creek was when you broke through the ice and we’re good. Better yet, don’t tell me you broke through the ice or even that you tried to jump it – just sneak through the back door, put your clothes in the dryer and run through the house naked. I promise not to say anything.

My youngest hates the don’t ask don’t tell compromise of neurotic mom and wants to include me in every horrific detail. I can either breath deep and pray long, or go on Prozac for my nerves. I choose breathing. I also choose to join them, sometimes, on these adventures.

I know how deep the creek is because we’ve explored it during the summer.

I know the cliff down to it is about 20 feet – and that you cross over the ravine on a fallen oak tree.

I know where the rabbit hole is and where the copperheads hang out.

I’ve held many a frog and lizzard, a python, hugged wolves, fed tigers and lions (from behind a BIG cage), bottle fed a baby bear, and blown up Gi Joes.

I know that it takes only one firecracker to blow up an army guy and that model rocket fuse plugs need an electrical current to light and should not be used to blow up GI Joes – I also know those fuses plugs will NOT light with a simply firecracker fuse and I thank heavens for that lest Joe permanently be implanted in the side of my chimney. Rocket launcher fuse plugs need the rocket for stability. I knew why it wouldn’t lite and I know enough NOT to tell my son.

I know that my husband and his brothers played “war” with Roman Candles and trash can lids when they were young and unsupervised.

And I know that as long as I’m along for the ride, I at least do not have to worry about that.

I also know that unwinding at the end of the day with a good glass of wine and a book of poetry does help restore some sense of femininity in my spirit. And that is a good thing too.