Six Months Seizure Free and the Freedom to Drive

May 5, 2009May 5, 2009 Deana4 Comments

: 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.

What a Weekend

May 4, 2009May 4, 2009 DeanaLeave a comment

I was supposed to wake up at 5 am and get a jump start on my week. That didn’t happen. Turns out, my body wanted me to very self indulgently sleep in until 10 am. I couldn’t figure out why I am so tired, and then it hit me – we had a very busy three days.

Prom on Friday * a Woman’s Show at church on Saturday * the boys Play Saturday Night * teaching Sunday School, Church, and scrap-booking on Sunday (Charlie’s Senior Project).

Prom cracks me up. Mainly because the school gave the kids the whole day off to get ready. The girls spent the day getting their hair, make up, and nails done. The boys on the other hand, spent their day differently. Their day looked like this: Breakfast at I-Hop then off to see the new Wolverine Movie, after that, video games until it was time to pick up the girls. Oh to be a guy some days.

prom-2009-c-d I guess they had fun at Prom though – and that’s all that matters.

Come See Harvey

April 30, 2009 DeanaLeave a comment

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Wright Christian Academy Presents

Harvey

Saturday, May 2, 2009

7:00 pm

Just a little personal plug here. Both Charlie and Dillon are in the play. Given the exhausted looks on their faces after five hour practices, daily, I’d say they’ve been working hard. Come on out and join us and support these wonderful kids.

Prayer Journals

April 18, 2009April 18, 2009 Deana1 Comment

I tell my Sunday School class to keep a prayer journal. Prayer Journals are a way for us to communicate with God. It gets stuff out of my head and down on paper and that act alone can take away the sting of a situation and provide clarity. Prayer journals also help me keep an account of the faithfulness of God.

Four years ago, my prayer journal was full of my concerns for my oldest. Charlie was a freshman then and he was so unhappy. His classmates argued constantly. Everyone seemed harsh and judgemental, and no one liked themselves much less each other.

Oh yeah, freshman year. Lord of the flies from junior high bleeding over into high school.

Charlie had no clue who he was then. He was a loner with very few friends. He hated school and he hated life. My heart ached for my wonderful son who was and is so brilliant, so funny and so endearing. It’s the same heartache I feel for my youngest, who not surprisingly is going through the same questions. “Am I a man? Do I have worth? Where do I fit.” Halfway through 10th grade, Charlie came into his own. He found his identity and he found new friends. He has learned that he has a talent for writing, for comedy, and is graduating top of his class (Three way tie for valedictorian right now). Charlie even has a girlfriend for the first time. He’s doing just fine.

I’ve been here before, watching my boys walk this crazy road called adolescence and I’d forgotten that. Ninth grade is merciless, but it doesn’t last forever. My youngest, will survive just like his brother did and just like we did. I’d forgotten that, but God didn’t. He was faithful then, and He will be faithful now. I just lost my remember-er for a few days.

I Got Nothing…

April 17, 2009April 23, 2009 Deana4 Comments

Have you ever had one of those weeks where by Friday you did not want to handle one more phone call, one more email, or one more person at the door?

That is me this week.

I chewed out my son’s principal, only to find out that I did not have the whole story. At least I was calm in my I think you own me an explanation remarks. I was clear, concise, and respectful with my concerns and asked for an explanation.If the facts had been correct, he would have had one, but they weren’t. He did tell me that I was a lot nicer than he would have expected given the information I was handed. That did not make me feel better. Knowing that my son lied to me and played a deep victim in this situation hurt my heart.

My friend’s mother in law passed away and today was the funeral. I got to be there for her.

My Dad is sick.

There are things going on with my boys I cannot write about. Not yet anyway. What I can say is my oldest is graduating highschool in a month, and my youngest has serious self esteem issues that I do not know how to fix.

And other things I cannot write about.

What has me so fried right now, is the fact that I am powerless over every single thing that happened this week. I cannot fix, control, or change any of it. I don’t like that. I took most of my nervous energy out on my gardens yesterday, and I’m working on setting those blog posts up. My gardens are a place of healing for me. It’s a place where God and I get to meet almost face to face, and I love it. It’s also a place where I have some control. I design it, and plant it. I build and have a hand in creating beauty. It is renewing for me. I wanted to do the same today, but it’s been pouring rain all day. I’ll be back at it tomorrow.

What do you do when you are overwhelmed? Where do you go for rest?

Guest Blogger – Charlie O’Hara

March 24, 2009March 24, 2009 DeanaLeave a comment

Charlie wrote this introduction for his senior year scrapbook and I asked his permission to publish this here. Charlie dreams of being a writer and is leaving for college in the fall. I also think he has some level of comic in him, but that will be determined later.He’s a very engaging writer. I think he’ll do well in college. So, I’d like you to meet our oldest son, Charlie.

Written by: Charlie O’Hara – 2009

Hello, readers! Allow me to introduce myself. I am Charles O’Hara, senior in in high school, resident of Oklahoma, and currently 15 years sober* (mom’s explanation follows later) … Moving on. If you’re reading this, then you’re probably wondering one thing: Who am I? Well, you’re in luck, because I’m here to answer that exact question. So sit back, relax, and enjoy the show.

Now, in my opinion, there’s no better way to accurately describe myself than to start from the very beginning. Unfortunately, that’s apparently not allowed, so I’ll just start by talking about my life in its current, unaltered and somewhat stable condition. As I mentioned earlier, I currently live in Oklahoma with my family. My parents’ names are Jeff and Deana O’Hara, and I have a 15-year old brother named Dillon. I’d like to say it’s a pretty quiet life, but if you’ve met my brother for even a minute, you’d know I was lying.

As I also mentioned earlier, I am currently experiencing my final year of high school. After this, it’s off to college. I just know the time is going to fly by, so I plan on using this year to the fullest. I will be determined! I WON’T GIVE IN! THEY CAN’T LET ME!!! Ahem… Sorry, got a little carried away. Anyway, I go to Our Savior Lutheran Church every Sunday (usually). I also go to an event called Ablaze Live Church every Saturday at Liberty Elementary. It’s a contemporary worship service that is also sponsored by a movement that is trying to establish more churches in the Midwestern U.S. It’s an awesome place to worship on Saturdays. What? No, I’m not using this as an excuse to advertise. What would make you think that?

(4300 S 209th East Ave, Broken Arrow, OK, every Saturday night @ 7:00. Be there!)

Ahem… So, what’s next? Oh, yes! The neighborhood. Well, there’s been a bit of drama around my neighborhood recently. I was not extremely social around the people in my block, so I’m not too involved with the sitcom feuds between the families. So, here’s the situation in an eggshell. Two of the families were in a bit of a feud that started over their basketball nets, both of which had been badly damaged (there was probably more to it, but that was what started it). Things have calmed down a bit since then, and both families have a new net, though there are now some strict rules about playing with them.

Now, I think I’ll describe my family for a brief moment. My parents are both actively involved in the Ablaze movement. As a matter of fact, my dad’s the lead singer and guitarist for Zion’s Fire, which is the band that usually plays at Liberty on Saturdays. As most of you know, I also have a 15-year old brother named Dillon. He’s currently in 9^th grade. All I can say about him is… well, it’s never a dull day when he’s around.

Okay, checklist. Home? Check! Church? Check! Neighborhood? Check! School? Big check! …Etc. Hm. Well, I’m a member of the Varsity soccer team for WCA. I’ve finished two stories in my “Holiday Detective” series. I like video games, I’m 18 years old, I have a Driver’s License, I type 65 wpm, I have a MySpace and a Facebook, I’m 5’ 9”, 145 lbs, and I have an alter ego! …Huh. I think that’s it. So for now, this is Inspector Charles O’Hara, Private Eye, Holiday Detective signing off.

* The Baby-Sitter Story

It’s late, we arrive home from our first date night in well over a year to hear our babysitter tell us, “I think we got your kid drunk, we are so sorry.”

Those are not words, parents want to hear and those are indeed words that need an explanation, especially when your kids are only one and three at the time.

Jeff’s boss and his new wife were considering having children and wanted to baby-sit for us. Charlie was three and Dillon was one and a half. We thought to ourselves “Hey a night out. cool!” and let them baby-sit. We had not been out by ourselves since our youngest was born.

Desperation can definitely lead to lack of judgment.

Unaware of how quick little ones are, our want to be parents some day baby sitters, set out chips, salsa and Coronas to snack on (for themselves.) Charlie walked over to the table, grabbed a chip, dipped it into the very hot salsa and ate it. Shocked at the heat, he looked for something to drink.

He found the Corona’s and before our babysitters could reach him, he was vertical with it. They are guessing he downed about half of the bottle before they were able to grab it.

Thanks for the intro Charlie – I’m looking forward to more guest appearances on my blog.

Welcome Home

March 21, 2009March 21, 2009 DeanaLeave a comment

March has definately been a month for traveling. First Jeff leaves for a week in Florida, and then I am in Nashville Tennessee. I came home in time for Spring break and have been blessed to have time with my family this whole week. My boys and I, spending time hanging around the house watching scary movies, working in the yard, or just making cookies. It’s been different this week. In a good way really.

I can remember when I’d send my boys to camp. How different, and more grown up they would seem when they came home.

I feel different today. I feel like I’ve been to camp. I even feel a little more grown up. I know more about myself than I did just a week ago. I know more about God.

It’s strange. Both of us traveling. We aren’t used to it. Jeff isn’t. I’m not. And yet here we are, following God individually and together.

Our family is growing. My boys are changing. I’m changing. I’m still Mom. But I’m not Mom in the sense I was when they were younger. Our relationship is evolving into something more. And something less at the same time. It’s almost bittersweet in that regard.

They don’t need me like they used to.

And yet, they need me more.

They need a Mom who is a person as well as “Mom.” A mom who follows God where – ever he takes her. Knowing that she will always come back home.

I’ll always be Jeff’s wife, Charlie and Dillon’s Mom. I haven’t always been Deana. Not until recently anyway. Finding her is fun.

The Jury is in, I am ADD

March 6, 2009March 31, 2009 DeanaLeave a comment

I started my ADD journey close to three months ago. The first month my doctor didn’t agree with me on my assessment, but gave me medication anyway. I received my first prescription for a very low dose (read why bother dose) of concerta. I didn’t see any results and went back feeling discouraged and at least willing to try a higher dose. She bumped up to 36 mg.

My 90 days are almost up. During that time I was to set goals, redistribute some chores, and set some boundaries.

We learned some things. By letting go of the need to be all things to all people, I have more time to do important things like balance my check book and get our finances all in one place. They get done more quickly as well because I stay focused on it. My front living room is painted (with a lot of help from my husband). I have permanently delegated the boys laundry to them. They are 16 and 18 – so this is no devastating burden trust me and well, they didn’t die. I might, but they haven’t.

My memory is returning, and actually I’m discovering that I might not have really lost it, I just have more certainty (clarity) during events (because I’m paying attention) that it’s easier to recall things. I don’t change what I remember based on someone else insisting it was some other way. Okay so that little tidbit drives my husband and youngest nuts, but that’s okay. I feel better knowing I have the clarity back.

My mother still thinks it’s just menopause. I think it could be that menopause has made my ADD worse and harder for me to manage on my own. I cheated during my 90 days – I tried going a week without the meds and everything went back to the way it was. No more cheating, I’m sticking with this. This works.

I’m accomplishing goals, thinking clearly, speaking and writing with clarity (most of the time – not counting hormone days), I’m setting goals and achieving them. I feel better about myself, and my happiness is returning because my self esteem is returning. I’m calming down and not so hyper and bouncing off the walls. I’m not perfectly organized, I’m just learning how to be perfectly me and I’m okay with that.

The Day Mom Broke

February 24, 2009March 31, 2009 DeanaLeave a comment

I can remember the day, years ago, sitting at our dining room table writing our Christmas newsletter when “I’m gonna KILL you!” screams ripped through my peaceful writing time. The next thing I knew the door to the garage burst open with my five year old running for his life from his (very wet) seven year old brother. Dillon ran past me, with Charlie in fast pursuit. Through the kitchen and living room they went with a brief chase around the couch. Dillon then made his bolt down the hall and into our bathroom, locking the door behind him and falling against it in fits of laughter. Charlie hit the door too – pounding on it with both fists, screaming at him the whole time.

I crumpled up my Normal Rockwell lie of a newsletter and started over. “My sons are trying to kill each other today, and I have no idea why. Charlie is soaking wet, it’s cold outside and I can only assume Dillon decided to spray him with the garden hose. Who knew it still worked in the winter. I thought we’d put it away. Dillon found it again and plugged it back in. I’m not surprised. Dillon is locked in the bathroom laughing, and Charlie is pounding on the door trying to kill him. Should I intervene? Or let nature take it’s course. Ah yes, the true issues of parenting I can’t find in my parenting books:Do I make them love each other? Or let them fight it out and see who survives?”

Charlie finally gave up and went into his bedroom to change clothes. I knew the battle wasn’t over. Charlie would at some point get even. I just didn’t know when or how.

There was a time when these expressions of brotherly “love” would have me baffled to the point of tears. My husband had come home to find me sitting on the middle of the living room floor in tears because I thought I was a failure as a Mom. “They hate each other!” I cried. “What did I do wrong? I’m a failure as a parent.”

Jeff walked back to find them playing cars in their bedroom and asked what happened. Charlie piped up. “Uhm.. Mom broke Dad. We don’t know what happened, we weren’t doing anything.” Yeah right.

They were fighting – over I don’t remember what, and I had finally had enough and fell to the floor on my knees calling out to God. “I’m so sorry! I failed! My boys hate each other and it’s all my fault.” I basically had a nuclear meltdown.

That would be when Jeff sat me down and shared with me all of the ways he and his brother showed “love” for each other. Basically, they beat the snot out of each other until one got big enough to hit back hard enough that it hurt. After that, they became friends. OH.

My boys still mess with each other, but not as bad as they did. When they were younger, Dillon would throw himself to the floor crying hysterically saying that Charlie hit him and Charlie would get in trouble. It did not take long for Charlie to learn if he was going to get in trouble anyway, he might as well hit his brother. It did not take long for Dillon to stop throwing himself on the floor. Now they just play mind games.

Take Sunday night for example. Once a month we go to a leadership Bible Study. Jeff and I lead it, and the boys babysit. This month Dillon had the night off. He knew we were going, but was asleep when we left. When he woke up the house was dark and he was alone. He’d forgotten where we were, so he called Jeff.

Relieved to find out he wasn’t missing anything, he hung up. Charlie piped up then, “You should have have told him the rapture is real after all and he missed it. That would have been funny.”

Brothers. They WILL love each other some day, right?

Honorable Mention

February 4, 2009March 21, 2009 Deana2 Comments

The Tulsa Garden Society had their annual amature photo contest last month. Dillon saw the article in the paper and really wanted to enter, so we did.

All of the divisions had stiff competition and there were 700 entries overall. The winning photograph in the general garden division was this magnificent flower. While my entries were good, so was everyone elses. I learned a lot about style, shutter speed, effects, placement and whatnot.

Dillon’s entries did really well in the under 18 catagory and he received an Honorable Mention for his shot of a Dogwood tree in bloom. Way to go kiddo.