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.
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.
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.
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.
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.
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.
It’s been five weeks since we made the trip to the Children’s Hospital in Fort Worth Texas, and I’m happy to report that Dillon’s new medication is working. He has not had a seizure since October 5. Dr Malik put him on a low dose of Lamictal (25 mg twice a day) and Depakote ER (250 mg twice a day.) Dr Malik has seen a lot of success with this low dosage combination and thought Dillon was the perfect candidate for that.
There are potential side effects that need to be watched out for and with the slow ramping up of the medication, we’ve been blessed to avoid those. The only one that came was a temporary and very mild case of pleurisy. That too is now gone. Since coming home from Fort Worth, life has been busy. Between helping Charlie apply for colleges, fill out scholarship forms, and fall yard work, my boys have both competed in a Tri-State soccer tournament in Joplin (their team placed third overall) as well as a high school retreat. This week Charlie is in Washington DC with several classmates. When he returns, he’ll being finishing his applications, trying out for a play, working on a Youth Retreat, and being the world’s master guitar hero.
Tri-State was scary for mom, and annoying for Dillon. I went along to not only chear on my boys, but to keep an eye on him. Varsity soccer is rough and Dillon got creamed more than once. Creamed or not, he kept going back out there and I’m proud of him for that. We only had one (or 2) real scares where he collided with the Goalie from Grace, took a cleat to the chest/throat, and hit another players shoulder with his head. All that and not a single seizure. He’s going to be just fine.
That is life in a nutshell right now. Living with epilepsy, means living, not waiting. And that is encouraging.
Hospital trips are never fun even when they are planned. If you ever find yourself with a planned hospital trip with your child, young or old here are a few ideas for you to take along.
1. Handheld games such as video games of all sorts – Dillon owns a PSP, but any hand held will do. Toys R Us and Wal-Mart also sell those $10 hand held type games for all ages.
2. A favorite animal or blanket. While Dillon is too old for a stuffed animal or security blanket, he does have a throw that my mother made him several years ago. Hospital blankets are actually very thin and the room can be cold. Having that extra throw helped keep him warm and did provide a sense of normalcy and home.
3. Art supplies. Younger children can be kept entertained with a coloring book and crayons. Dillon (my artist in the family) has his own sketch book and charcoal pencils. This did an excellent job keeping him occupied and giving him something productive to focus on rather than the wires glued to his head. It also provided a bonding opportunity between he and the medical staff – giving them something tangible to talk about other than his medical condition.
4. Books are always a favorite, unless you are 15. Most children’s hospitals have an excellent selection of books for your child to read while they are there.
5. Snacks – The hospital only serves three meals a day and let’s face it while the food is nutritious , tasty it isn’t. I could not get Dillon to really eat any of the meals they served even if they were “kid friendly.” We brought with us things like trail mix, fruit snacks, Jello/fruit cups, string cheese and slim jims. The floor had a family kitchen with a refrigerator. Be sure check with the nurse or doctor before allowing your child to eat them. Dillon was placed on a special diet our second day there (no sugar) and he could not have most of what I brought for that one day. They did however allow sunflower seeds.
6. Toiletries for both you and your child. Children‘s rooms are usually private, they also supply little bitty towels and baby shampoo. Thankfully I brought our own. While Dillon could not take a shower until the last day due to the EEG, he was much appreciative of having some personal comforts from home such as adult shampoo. If you do forget something from home, such as a toothbrush, you can find them in the gift shop at the hospital.
7. Do not forget money for meals for you. Dillon’s food was covered on our three day stay, mine were not. The hospital cafeteria has changed over the years offering a wide variety of excellent meals, but plan on spending no less that $7 per meal.
8. Some rooms come equipped with DVD/VCR players (at least in the kids ward.) so we brought different videos from home to keep entertained during the daytime. The hospital also had a child resource center that allowed us to check out movies and even a Wii Video game player with Wii Sports.
9. Cell phones and laptops if you have them. – Dillon and I both brought our cell phones with us. Since we have unlimited texting, he was able to keep in touch with his classmates during the stay. This was very comforting for him and it helped me stay in touch with my husband when phone calls just were not feasible. I brought a lap top just in case we had Wi-Fi access. The floor did indeed allow wi-fi, but most pages were banned from their server. Still I was able to access blogger as well as yahoo mail. This enabled us to keep in touch with friends and family who wanted updates during our stay. It also came in handy when I wanted to research medication suggestions or tests they were running.
10. A folder and a notebook. Being in the hospital means being inundated with facts, figures, information, and what not. There was absolutely no way I could keep all of the information in my head. Write down what they tell you so that you can look it over, and mark any questions you have for when they come back. I had a notebook folder that I was able to put all of the fact sheets and whatnot the doctors and nurses gave us while we were there.
I don’t suggest bringing unrealistic expectations, such as you and your child are going to get along wonderfully, that they are happy and compliant to be there or that you as a parent will handle every situation perfectly. Hospitals are a scary place and children will communicate that fear in many different ways. A normally talkative and enjoyable child can suddenly start acting out and withdrawing emotionally. Don’t force a kid to be happy to be there. Give them honest and age appropriate answer to their questions. Be there with them, love them, and keep your boundaries. Sometimes a child will test to see “How sick am I?“ by seeing how much they get away with. The more a child suddenly gets away with, the more sick they will believe they are. Remembering that will help a lot. And remembering to take breaks will help you a lot as well. Parents can be scared too, but we try not to show it because we don’t want to scare our kids. Be patient and understanding of yourself as well.
I brought Dillon’s homework with him thinking he would be able to work on it while we were there. This child was so sleep deprived, because of the type of testing we were doing, that he wasn’t able to work on it. And that’s okay. Work with the school and teachers for an extension on missed assignments if need be.
And don’t forget to take care of yourself. Most of the people on the ward were locals and had multiple families members there to help them. That isn’t always the case, and sometimes you’ll find yourself the primary caretaker while your child is in the hospital. Don’t be afraid to take walks from time to time (just check with the nurse first) or to eat downstairs. Mom’s and Dad’s need quiet moments too. What parents are offered to sleep on might not be the best accommodations (I had a hard mat-like couch thing) but do try to sleep or rest. I know it’s hard, I spent more time laying awake listening for Dillon than I did sleeping, but do try.
And take advantage of the things the hospital does offer. The child care people offered to come in and play games with Dillon to give me a break – but I didn’t take advantage of that. Hospitals also have chaplains available to talk too.. Just to talk to if you need a spiritual pick me up.
It doesn’t matter if you are dealing with a new diagnosis or a long term issue, every step, every test, every something new brings it own challenges, fears and / or joys. Have a support group of friends and family to talk to and lean on. Don’t be super Mom (or Dad) and think you have to do it all by yourself. You don’t. Don’t be afraid to ask for help.
There is nothing that shows the truth about relationships like being under video surveillance for 48 hours – with a teenager to humble you – or me rather. What on earth made me think I could handle that trip alone is beyond me… That was mistake – and a good experience all at once. It didn’t matter what I did – I felt guilty. I hated making him be there, but knew we had to be. I hated leaving my oldest behind – but knew he could handle it. And I hated watching my baby go through things a mom doesn’t want to happen. I felt guilty when I stayed, when I corrected unacceptable behavior and I felt guilty when I left the room for walks, or coffee or whatever. I only left him alone maybe three or four times a day. I needed those quiet times to pray or find other parents who were also someplace they didn’t want to be, looking for answers and healing as well. But I still felt guilty. False shame hits the best of all of us some days.
Dillon and I spent three days in a Fort Worth hospital, trying to find answers for his epilepsy. Neither of us wanted to be there really. Who would? I wanted answers and was willing to stay to find them. Dillon just wanted out of there, and definitely did not like the sticks (5 in all) , the wires, the food, or the camera. Or sharing a room with MOM of all people for three days straight. Not only did the staff get to see his seizures and eeg activity – they got to see the honesty of how a Mom and teenage son relate during three stressful days of constant activity, boredom, and no sleep. Oh yes, we gave them a great stress study. Mom’s and sons can get snippy with each other. 😉 Even snippy, they still love each other. Though I will agree that special needs nurses do not necessarily have a sense of humor. There were jokes that we shared that he thought were funny, but no one else did.
They don’t have many teenagers in that ward. Mostly they deal with young children – thankfully there were staff who had teenagers, and they understood the looks, the sighs and the breaks.
I can think of 100 things I could have done differently – but really, I’m just trying to change the reality of his being mad about being there. He had the right to be mad, and I kept the line of being mad is okay, taking it out on others is not. The rules at home still apply. I needed to let go of making it all okay – because it really wasn’t. Not for him anyway. There was no way Dillon was going to talk to me about what was going on in his thoughts and emotions while the camera was rolling. Conversation was not what he wanted. He had my company though – he knew I was there for him and with him. I did succeed in getting him to play with the Wii – I was so bad at the pool game he just had to help. Score one for mom. Mostly though, he drew – or watched a sports game or played on my laptop – he found a games web page. He wanted to speak to no one..
What they didn’t see – was the ride home. About halfway home tensions released and our relationship showed the other side – the best parts of honesty, communication and love. A child who will allow me to touch him and tell him I love him – but only when no one is looking. I would try to touch him in the hospital and he’d pull away in anger and teenage disgust. And yet riding home, listening to a metal station for part of the ride and comparing it to the rock music of my day – we find a middle road and grace in a changing relationship. Riding home, away from the cameras – he could find his voice and feel my touch.
Raising boys, is harder than I ever imagined it would be and yet God’s grace is sufficient and never ending. And his love – like a mother’s – knows no end.