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.

An Awesome Day

I gave birth – via C-Cection – to a wonderful 7 lb 1 oz baby boy on June 10, 1993. Dillon’s lungs were not fully developed and he was what they call a “blue baby” and he was rushed to the EOPC at St Francis Hospital, where he spent 14 days before they let me take him home.

My grandfather also died that day and Dillon’s middle name, “Raymond” is in his honor.

Dillon’s first night was a rough one and the doctors were not sure he would make it. It was that night that I surrendered my life back to Christ, and offered God a trade – my life for his. Some call that a selfish prayer, but I don’t. It was in that moment that I really understood why Christ offered his life as a ransom for many. It was in that moment that I knew what it was like to be willing to lay down my life for another.

Dillon turns 16 today – he and his brother are the absolute light of my life. The song with this photo montage’ was written by Dillon and his father in about 2004 and recorded at the Lutheran Church of Our Savior, Tulsa, in 2004.

This song was written while Dillon’s epilepsy was still active. He’d had a rough day of multiple seizures and was hospitalized for observation. After he got home, Jeff heard him singing this song around the house. Jeff put music to it, and they sang it at church for Easter.

 

Copywrite: Dillon O’Hara – song may not be reprinted or performed without express written permission of author.

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.

Notso Wordless Wednesdays

Ken Davis teaching at the Professional Communicator's Summit
Ken Davis teaching at the Professional Communicator's Summit

I’m breaking all rules of blogging today. This is wordless Wed, and yet, I have words. Lots of them. I’m relaying a story and not engaging in a dialog, and I’m very self indulgently using the word “I” more than “you.”  Even so, I want you to read this. I’m trying to be careful how I write what I want to write today. Even though I opened with a picture of Ken Davis, this blog isn’t about a person – it isn’t even really about me, it’s about God.

If you walk away from this post with nothing but one thought – I hope it’s this – God meets our needs before we know we have them and if our remember-er breaks, he will make it new.

Have you ever had a dream? I do. This year, I’ve chosen to invest in myself and those dreams that can only come of God. I want to be a professional speaker. You my friends, went with me on the neurotic ride when I stepped out on faith and went to the Professional Communicator’s Summit a few months ago, and I appreciate that.

I was scared spitless traveling to Nashville by myself. I used to travel all the time, but that was before I became MOM. I felt guilty about spending money on a class that could have been used towards the boys.  I felt a lot of things. I also felt joy in following something I knew God had placed before me and trusting him with the results. Today’s wordless Wednesday photo is in part a reminder to keep your dreams alive, no matter how you feel on the inside, it is also a reminder to me about the faithfulness of God.

I loved being there, and I’m still digesting everything they taught. I worked up the courage for that by going to Speak Up with Confidence in 2008. The success from that gave me enough personal confidence to take more classes this year.

It’s been a few years since I chosen to invest in myself. The last time I did that was when I joined the Christian Writers Guild writing classes six years ago. We didn’t have the money to pay for it ($2,000) and after much prayer I submitted my application before the funds were available. Not how I typically roll. The following Sunday, I saw an ad in my church bulletin for a church receptionist opening across town. I applied for the job and was hired two weeks later. My classes were now paid for. I acted on faith – not foolish faith – but prayerful faith, and He responded. What I did not expect was the all out spiritual warfare that ensued. I fell on my butt pretty hard and it took me a long time to get over that. I never finished the classes even though I had paid for them.

Choosing to pick that dream back up, and start taking classes again, is scary. Knowing the God is in the middle of it makes it all worth it.

When Jeff told me he was being demoted at work and we needed to cut back on all financial expenditures, I questioned the wisdom of my dream and the money it would take to fulfill it. I also fell into a small pity party, but I’ll spare you those details for today. Today, I want to relay something else.

I have been speaking publicly since Spring of 1979. A family member had joined AA  the summer before and I was dragged into Alateen the following Spring, ungrateful and less than willing but present. Strangely enough, I stayed and they stuck me behind a podium to tell my story the following year. Shy as I was, I learned that I have natural talent for speaking and I’ve been speaking nationally at conferences, retreats, and groups since then.  Feeling bored with the “adult child” stories, I stopped giving 12 step talks five years ago. They just don’t seem relevant anymore. I do, however, still speak and want to pursue that as a profession today.

I have spent the last five years, learning how to bring my recovery story into church and rework my 12 step talk into my Christian testimony. I’ve had a few false starts, stumbling on words and making people laugh hysterically without meaning to. (Classic testimony gone bad: I have a few catch phrases, one of them being referring to revelations from God as “Burning Bush Moments.” – perfectly acceptable phrase, UNLESS it is paired with a story about how I accidentally set my dress on fire trying to hide the fact that I was smoking from a pastor. I learned what “mortified” really means that day.)

With the financial uncertainties of today’s economy and Jeff’s current demotion, I really started to question myself and doubted that I was really called to do this. I thought that maybe I should find something else. And I know that’s Satan and not God speaking. How I face obstacles speaks volumes of my character. Do I cave at the first sign of difficulty or do I persevere? Do I trust God to provide the means necessary? I’ve learned I do a little bit of both, and that I pray a lot like King David in the process. “How Long, Oh Lord…” (Wrist on forehead for effect.)

And then God, in a way only God can… spoke to my heart when I least expected it. He reminded me of something this Sunday while I was teaching a class.

I went to my very first women’s retreat in 1995ish (I can’t remember the actual year.) My former pastor’s wife was a huge Ken Davis fan and showed his videos a lot. At one of those retreats, the leader showed a video called Healer of the Wounded Heart. It was one of those stories that really touches my heart. It has a great message about how much God loves us and how we should love others, and yet there was a hidden story that I’d forgotten. I really do not remember the story as his, but it must be as it really is in the video- and I have no idea why it’s in his talk – other than as an example of a father’s love.

I own his videos today, and like Lisa, I show them when appropriate. What thrills me about teaching, is how much God teaches me in the process. In my “where are you in this God?” questions over the past two weeks - He chose to remind me of a time he was there before I knew of the need. I showed Wounded Heart in my Sunday School class this week. It’s been years since I’ve watched that video, and I only chose to show it this week because we are in a gap between classes. We just finished one series and do not start the new one until May 10. I brought it because it fit pastor’s sermon for the day:  “God Heals a Broken Heart.” I thought the video fit perfectly.

In Wounded Heart, Ken relays a very short story about a time he saw a speaker and while this man was delivering his message a child comes on stage to speak him. Ken was surprised to see the man stop speaking, turn to the child, whisper in his ear and kiss his cheek. Ken asked him about it later – and turns out the child was his son and this was routine. No matter what, at bed time, the child would find his dad and the man would stop what he was doing whisper in his ear, tell him he loves him, and pray over him that God would send his angels to watch over him and protect him while he sleeps. For the sake of the video – it’s really just a nice little story that gives a picture of a Father’s Love.  In the grand scheme of the whole video -I thought it was kind of a throw away story. It’s not a key point that one would keep with them or so I thought. It’s not one he stayed on for very long anyway. And it’s not one I recalled hearing, ever.

And yet…

I first saw that video in February of 2000. Lisa had moved away and Zeal was now doing the retreats. This was her keynote video for the retreat. I remember the whole “Love Monster” thing as that is what she pulled out. The whole retreat was about God being the Passionate Pursuer of our Hearts. Christianity isn’t a list of dos and do nots, rather it is about loving one another. It’s about that God Shaped hole in our hearts that needs to be filled. It’s about a lot of things. The over all message was not about praying for angels to watch over a child and yet there it was – a word for me that I apparently received and put into action without realizing it.

I speak at times on the Eyes of Angels – and how when Dillon was first diagnosed with Epilepsy, (Summer of 2000) we would pray for God to send his angels to watch over him while he slept and keep him safe. Up until Sunday, people ask me where I learned to pray that and I would say had no idea, I must have have heard it somewhere. It’s not a normal prayer. It’s not a prayer I’d ever read about or learned about, I just remember I heard it somewhere and thought I’d try it. It is also scripturally accurate. I didn’t know that until I studied it.

I don’ t remember learning that from Wounded Heart, but I must have. The timing fits perfectly.

And so, here God speaks to my heart. “I was there for you then before you knew you had a need, and I’m there for you still. I won’t leave you hanging, I promise.”

God used a video at a retreat, to teach me a new prayer before I even knew I was going to need it. And he used that same video almost ten years later to remind me that he was there for me then, and he is there for me now.

One of the greatest gifts about teaching and about speaking, is how much He teaches me  about love, about himself, and about us in the process.

I’ve closed with this in my talks many times, and it is as true for me today as it ever was.

We are at times those eyes of angels sent by God to watch out for one another. Whether it is upfront and personal, or in a talk where we allow him to speak through us. We are also that God with skin on (or the “Love Monster” as Ken calls it in his video)whether it is  for that person hiding in the back corners of our churches or someone who may be sitting next to us who is walking through something they have never had to walk through before: Cancer, a divorce, the loss of a job, or maybe the death of a child or spouse.  And we know, either for the first time in our lives, or as reminder yet again, that we are never alone.

God is not only in the middle of all that is happening right now, he’s already written the ending. All we have to do is step out the day to day and remember that we are not alone.

What about you? Now that I’ve shared this story with you. Are you willing to share a story about God’s provision in your life? Leave me a comment. Let’s talk about.