What does Epilepsy look like anyway?

As a Caregiver of two boys with epilepsy, I have done tons of research. I have read about different seizure types, symptoms, the brain and lobes involved, genetics, syndromes and the list goes on.

First, let’s go over the basics. There are over 40 different types of seizures. They are all either Partial/Focal or Generalized seizures. We will do a quick review of the basics!

Partial/Focal Seizures start in one area of the brain often called a focal point. The symptoms of this type of seizure depend on what area of the brain is having activity.
Breaking this down further, there are two main types of Partial seizures:

Simple Partial Seizure: Just on small area is involved. The person is aware that something is happening and will remember the seizure.   Depending on where it is occurring it can include strange smells/taste, weird feelings, hallucinations, visual flashing/colored lights, stiffness, numbness, tingling or jerking of a body part, intense fear, euphoria, abdominal pain, increased heart rate and others. Sometimes a simple partial seizure is called an aura, when it happens as a warning of a bigger seizure that follows.

Complex Partial Seizure: A larger part of the brain is involved. The person is not aware of what is happening and will not remember the seizure. Depending on where it is occurring the person may wander, pick up things or pick at clothing, smack lips, cry, scream, repeat words that don’t make sense, mumble, make repetitive movements without purpose (called automatisms) as well as having same type symptoms as the simple partial.

Generalized Seizures start in the whole brain at the same time. The person will not be aware of what’s happening and will not remember, with exception to the myoclonic.

Absences: The person may stare blankly, chew or have lip smacking eye lid fluttering usually for a few seconds and go back to what they are doing. This seizure is often thought to be daydreaming and is easily missed.

Tonic: The person experiences sudden body stiffness without warning if they are standing they will fall (usually backward) and can injure the back of the head. They may bite their tongue or cheek. the seizure is generally very brief and recovery is quick.

Clonic: The person experiences muscles will contract and relax rhythmically. The breathing is likely affected and they may sound noisy while breathing or stop breathing. The skin may become pale or even turn bluish in color and they may lose bladder/bowel control.

Tonic Clonic: The person experiences both the Tonic and the Clonic described above. This seizure is generally the most recognized seizure in epilepsy.

Myoclonic: The person experiences quick muscle jerks, often shortly after waking up. This seizure type is classified as generalized, although the person is conscious and aware that it is happening.

Atonic: The person experiences a sudden relaxation of the muscles and often will fall (usually forward) and this seizure is also known as a “Drop Attack.” The seizure is generally very brief and recovery is quick.

Now that we have that covered let’s talk about how it feels. I have seen many types of seizures but I have never had one. I can only imagine what it must feel like, research the subject, ask the boys and others what they feel. So I did just that.

Simply put, if a seizure is a Simple Partial or Myoclonic the person knows it’s happening and can respond. They will remember what happened. If it is another type of seizure the person will likely not remember much if anything that happened. They may seem confused, angry or even just want to sleep. Most people with epilepsy report that after a seizure they are tired and don’t want to be asked a bunch of questions. They may have pain in the body due to injury or muscle spasms. They may also know that they are missing time and that can be very frustrating. So, none of us that have not experienced seizures have the right to judge how they should feel, and the best thing we can do is let the person just relax.

I cannot imagine what it must feel like to experience refractory seizures, but I do know what it looks like.



So this is France?

12715553_10208265896782337_2488624869664445143_nI am a Home School Mom. It shouldn’t have come as such a surprise, I knew, I guess I just refused to admit it. I knew how terribly Brynn still struggles to read at a second-grade level. I knew too that Brett still struggles to work on the level he mastered 5 years ago. Somehow, it did come as a shock and caused great sadness to read in black and white that I have two children who are now diagnosed as being “Moderately Intellectually Disabled.” Perhaps deep down brynnbrett1inside I had hoped that the testing would provide clues to reach them, I hoped that I was missing. Surely there was something that would magically make what is taught stick in the brain for later use.
When your children are little and you wonder what they will be when they grow up. As a Mom, you see qualities in each of your children that make them unique and special in their own way. I can still see those qualities in Brynn and Brett, I still momma2think Brynn would make a great, fix it all mechanic and Brett would surely be a wonderful, caring and compassionate doctor. You have all these hopes and dreams of your children’s future and you want them to achieve great things. You hope that they will have even more happiness than you have and if at all possible that they will grow into successful and God fearing people, with a great deal of moral responsibility and grace that they will accomplish many great things.

Have you ever read “Welcome to Holland?”
12782539_10208366778464316_129385383_n I feel like I embraced Holland, which in our case is Epilepsy. I learned all I could about it and I learned to appreciate our family life in Holland. I joined all the groups, found others like us. I advocated I researched thousands of hours and I read more than the tour guides most refer to as physicians likely do about how we ended up here on the genetic map. I made the best out of Holland and did my very best to help all the other parents who ended up in Holland unexpectedly like we did. Now I have been told that I am not really in Holland, I am in France as we are not just dealing with epilepsy, it is moderate intellectual disability as well.  I knew Brynn had been diagnosed with Cognitive Disorder 12722143_10208366778544318_679468329_nNOS and Cognitive Disability, but I assumed that when his seizures were better controlled that it was likely that his cognitive difficulties would be better. His seizures are so much better controlled than they were 5 years ago when he completed his first neuropsychological evaluation. He has been on the same medication for over two years with no adjustments at all, so this is truly who Brynn is and where he likely will stay for life. Never in a million years would I have been prepared for his full-scale IQ to be 17 points lower. We saw an immediate 3-year regression with his second status Tonic Clonic seizure. It took a few years to even get almost back to where he was and he was already behind in all areas. I can only presume that this is what caused the IQ 12782387_10208366778664321_1202466114_nlevel to drop, I have written before about brain damage from seizures.  I couldn’t have imagined that Brett’s scores across the board would be so low either. Both boys score highest in Verbal Intelligence which I have read is usually the case in Moderate disability. I suppose this is a blessing, as they are both able to speak and understand a broad variety of words. So, I guess I need to explore all I can now about France. We will have to find more tour guides, join more groups and find out all we can about this place that we have been placed. I have to wonder, if it would have made a difference had someone told us when they were born that this journey would be different.
About the Seizures
Brett’s seizures still remain pretty intractable. He is having more big seizure free days since increasing two of his medications. Still having a multitude of seizures weekly. His frustration is evident, especially when he falls or has the seizure clusters. He is still having intermittent weakness in his legs and has not received the appointment for PT to see what the problem is with his ankles yet. Brynn is, for the most part, staying at a 1-2 seizure a week trend. He has gotten pretty good at knowing when he has had a seizure nocturnally, even without bed wetting, he can feel the effects and has no problem expressing me how he feels.



We moved to a New blog site…


There are a few of you who follow this blog of my sporadic at best ramblings who are not involved in social media, so sorry for the long span without an update. There are a few people that say things like “Your so strong.” I hate that because I am not at all strong. Without God’s grace and help, I would have never been strong enough to get through the stress and trauma I have seen in my life and surely this epilepsy monster would have put me over the top. I have likely done more research than the six neurologist, too many pediatricians, Psychologist, blog9Neuropsychologist, two epileptologist’s and the geneticist combined trying to figure my boys condition and cause of it, what we are dealing with and how to help them. I have still not given up, like everything else in my life I am geared to over obsess over problems until I to let it go because I start to loose my mind or until I reach the answer, whichever comes first.
Unless you have a child with intractable refractory epilepsy it’s
impossible to comprehend the roller coaster that we live on. Every day, blog17you wake up and brace for the unknown. Seizures seem to constantly change and evolve either for the better or worse, but nothing stays the same long. We have been blessed to see weeks without a single seizure and we have struggled when we watched the twinkle in their eyes disappear as seizures took over and stole their precious memories, learning, endurance, laughter and fight away. At least, that is how our journey has been. Plans? We don’t often get to make plans. It is much easier to live spur of the moment. We have left seizure clinic in a wheelchair half the times we have been to see the blog16neuro and once in an ambulance for status just getting a seat belt in the wheelchair.
I have forgotten to bring shoes to the ER, forgotten what medications they take, even given the wrong age and date of birth to paramedics. I am lucky I remember my own name in an
emergency. I have zero sense of direction, and just so you know, I couldn’t find my own home without a GPS if I go too far from home! I am far from being smart, I know all you e-moms think I am. Trust me, I have read thousands of studies and blog224articles about epilepsy, regions of the brain, genes, seizure types and anything else I can get my eyes on. The better I understand things the better I deal with them. Regardless of the situation, I am not the “take two of these and call the doctor if you have a problem” kind of gal. Nah, I gotta know what to call this thing we are treating, research all I can about it, know what caused it and the name and every detail about that drug the Dr. just wrote on his script pad before I put in down any one’s throat! Epilepsy has been my weakness, I don’t know why it’s happening blog13and in spite of the years of research. I still don’t know how to fix it or even what caused it. Brett’s journey has been much worse than Brynn’s. He has has spent months of sleeping 16-19 hours a day and even on good days he sleeps 12-14. His seizure counts in the last six months average 3 a day. He has a large variety: Tonic Clonic, Atonic, Complex Partial and Simple Partial/Aura’s. We still do not count any seizures that are shorter than a minute, unless they come in a cluster and count that as one. When his seizure counts were lowest, his quality of life poorer. Seizure counts blog10higher and he lost endurance, balance, cognitive function and his laughter disappeared. Since his ammonia level and platelet level scare, we never have been able to find balance again. We lowered Depakote and saw an increase, went back up added Carnitine to try to help his ammonia level stay down that helped until a few weeks later he crashed again. We added Onfi, and I assumed that he would do well on it since Brynn has and hopefully get off one or more of the other meds. That didn’t happen. What a mess! His ammonia went back up and platelets blog5down, so we weaned Depakote. All this while Brynn started having an increase of nocturnal seizures, the Tonics came back as did the myoclonic jerks. Saw a new neurologist who is a lot like the old one the boys favorite (Dr. D). He’s almost 3 hours away, but smart and no BS kind of guy. He increased both their VNS magnet settings and put them on rapid cycling.
  He also increased Brett’s Onfi and Vimpat to see a small break and watch the counts rise again.  We decided to keep things as they are with blog19Brynn, offsetting any meds may cause him to go back to where he was. It’s likely best to just stay where we are and appreciate where he is, less is best! He has stayed on the same doses of Fycompa, Vimpat and Onfi for two years now. Brynn has maintained his 40+ pound weight loss well. His confidence is up and he is staying active happily living back in the country again. He is 16 now, so we are awaiting his new IQ test results to have him placed in a transition program that will lead to special job training.  Brett started the testing as well, but could not blog20complete the time needed due to seizures on 3 visits that stopped the testing, so we decided to wait until he is more stable.
We all really like the new house and have been doing a lot of projects around with the really huge Hickory tree we had to have cut down! We are still heartbroken over the horrible service dog experience. Brett has been affected in many ways. Just the mention of Blue can throw him into a seizure. We adopted two dogs to try to help (Flash and Daisy) and while they are fun, they still do not make up for the loss of blog6Blue due to her unstable temperament and aggressive tendency towards men. We put a complaint in with the BBB Here:
Unfortunately the trainer didn’t even respond and has not contacted blog2us since the end of July. We have had to give up on the service dog completely. Honestly, I don’t think Brett could handle the process again and I have doubts that he could bond with another dog like he did with Blue again. It’s a really horrible thing to have gone through, but we will do all we can to make sure this does not happen to anyone else. $5,800 is a lot of money to watch turn into nothing and there isn’t much you can do about it except sue, and loose better than half the money in attorney fees anyway. The Service Dog industry needs to be regulated and laws blog4need to be made to make these deceptive “Trainers” accountable for what they are doing to families. It should be illegal for anyone who has not been through training and received certification to sell a service dog. We are not the only ones, I have been contacted by so many people who have had failed service dogs. I just wish they would have contacted us before I signed that contract! When you have done all you can do just stand and wait… We have gotten this far with God, and with Him all things are possible!  While we are waiting we are getting things done! blog21Brian brought home a huge 8 foot table from work, we used the wood and made a wheelchair ramp out of it! Brett has used a loaner chair from Easter Seals for some time now. The Pediatrician said he needed a better fit, since the loaner was a bit bit, and the Physical Therapist agreed and ordered a really nice NXT Generation Tilt in Space wheel chair for him. One need down at a time!



It’s been a while UPDATE!

Happiest News First! BLUE and BLUE’S DELIVERY IS PAID IN FULL! Yay! Delivery is set for April 9th! We are so excited! We can’t wait to have her here and to train with the trainer on how to take her everywhere and keep up with her training as well. Brett is super excited! 17 days and counting down! With the trainer and Blue here we will visit stores, restaurants, bowling alley and theatre to be sure we do not have any access issues. This will help Brynn and Brett learn to handle Blue as well. We have gotten a few homecoming gifts from Blue’s wishlist. I will post the link at the bottom. Brett had a 4th medication added, Depakote. This medication has helped a great deal with controlling the myoclonic and atonic seizures that were making him fall. He is having less Complex Partials with this new medication added on and has only needed Diastat once for rescue. We also got the advice to give Ativan for the “seizurish” activity that often happens before a bigger seizure. It was confirmed that the “seizurish” activity is actually seizure activity. This has helped him to not go into as much clustering having this clarification. Brynn is still doing fabulous on his medication combo.
The Geneticist got the results back for the Microarray and the Fragile X, both test were negative for both boys. He believes what we are dealing with is “Metabolic.” Ha, after hours of researching I concluded that can mean hundreds of things. They submitted more blood and urine for more test on the 19th, awaiting those results. 


We worked really hard at fundraising to bring Blue home. As a special Thank You gift for two of the highest donors, we had these made by L&E Creations (they can be found on facebook). We love these mini Brynn and Brett’s! We mailed out some other gifts (Bracelets, Shoestrings

and necklaces) to anyone who donated $250 or more. We learned a lot through this fundraising adventure and hope to help others reach their goals as well! We are so very grateful for the families that helped! We know Blue will be so full of love through everyone’s gifts and prayers! Brett’s new glasses seem to be helping him to see better. He still cannot wear them when

he is feeling seizurish, but when his seizure activity is down he doesn’t mind wearing them. He will return next month to have his eyes checked again. We are in the process of house hunting for a house in the country. We know it will do both Brynn and Brett good to get the fresh air and freedom that this city life cannot provide them! Things have been pretty busy with my volunteering for National Seizure Disorders Foundation, Wrapping up everything

to get ready for Blue and seizures mixed here and there. Expect that April will be an even busier month! Really hope by June we can breath some Country Air! 🙂 Brynn and Brett were recently blessed to participate in the Warrior Beads Program through  http://www.1boy4change.org/
Chris and his Mom are a tremendous blessing and this is a great cause to donate to. They are a 501(c)(3) Charity too! 

I was in tears when I realized the seizure count estimates. Anyone who knows me, knows that we don’t count small seizures. If it’s not a few minutes long I don’t journal them, except noting seizurish, cognitively slow or Aura. Brynn was not diagnosed until his 11th Birthday October 2010. Brynn’s estimated seizure total since diagnosis? 744. Brett was not diagnosed until he was 8, in

August 2013. Brett’s Seizure Total since they have been journaled? 434. I knew Brett had already surpassed Brynn in status events, and I also knew that his Epilepsy seemed much worse than Brynn’s was. I had no idea that either of their numbers would be this high. Our Favorite prior neuro had me give seizure counts at each visit to keep track, especially when we changed medications or doses. The

estimates are the total of 2014 seizures multiplied by the number of years since diagnosis. We will keep adding beads to journal the Dr. visits, Ambulance rides, blood test, EEG’s, Hospital Stays, surgeries and everything else that they go through. I bought some very special

beads. They are white but change into a color only in the sunlight. We will use these for SEIZURE FREE DAYS! This is a really neat way to keep up with any medical journey. What a blessing 1 Boy 4 Change is to have gifted our Epilepsy Warrior Boys with this! That catches you up! Will try to post again soon!   
WoooWhooo Just 17 days till Blue comes Home!! Here is the

Amazon Home Coming Wishlist for Blue! We are so excited for

our Beautiful Blue to come home!!

Brynn and Brett LOVE getting the packages addressed to The

Epilepsy Warrior Boys for Blue, when you order through the 

wish list they come straight to our door!! Take a Look at this 


Oh… DON’T FORGET!! Thursday March 26th is Epilepsy Awareness Day!! 🙂

Guardian of the Night K9: 4 new puppies will be delivered to GOTNK9 on Aug. …

Our Service Dog Trainer started a blog! Now we can all follow along with Blue’s training and growing! How awesome!! ~Denise

Guardian of the Night K9: 4 new puppies will be delivered to GOTNK9 on Aug. …: 4 new puppies will be delivered to GOTNK9 on Aug. 1st and begin their training. SDiT Athena will be a PTSD dog for a solider, SDiT Camo will…

Circles of Reality….

Ever feel like your going in circles? I mean really going in circles, in life. When something happens it doesn’t seem new, just a repeat of the same circle. I find myself feeling this way a lot now, especially with the boys. So much of what they are going through is the same, watching Brett is just like watching Brynn all over again. I have a tendency to obsess over things. (Pretty sure you may have already figured that out with my past ramblings.) I suspect it roots from Mommas murder. It’s hard not to think that had I asked the right questions or researched it better, maybe the truth would have been known. 
There comes a time when you have to just accept things as they come to preserve your sanity. That’s where I am with this monster called Epilepsy. It has stolen so much from Brynn and to see Brett affected by it is just heartbreaking. The reality is that I can do nothing to change it, I can do nothing to fix it and I have done everything I can do. I pray every day for a cure  and the
seizures to stop, have spent days, weeks and months researching and trying to figure it out. I have tried a few diets, omissions in diet and even several herbal and even homeopathic remedies with no success. The answer is obviously not a simple one and maybe I am just not meant to have it today. I have accepted that, although that will not stop me from looking or praying it will!  
Brett’s VNS surgery was scheduled for April 4th. We spent Epilepsy Awareness Day (March 26, 2014) at the Zoo, celebrating Purple Day and having a fun family day before Brett’s surgery. It was a lovely day! We handed out lots of Purple Bags with Cards, pictures, Purple Epilepsy Warrior Boys Bracelets and had so much fun! Met some realy nice people and got to talk about Epilepsy with some really nice people. I hope we can go to a bigger “Real” event next year!      

I took Brynn to the ER on Sunday, with seizure clustering, fever, congestion and he had become lethargic. He was given the diagnosis of Mycoplasma infection. This is the third time Brynn has had Walking Pneumonia. I kept them separated as much as possible, used Lysol like crazy… but it wasn’t enough. On Tuesday, Brett was at the Dr. and given the diagnosis of Acute Bronchitis, likely the start of Mycoplasma Infection. He was given a Steroid and an Antibiotic Shot to try to ward it off as well as scripts for  Oral Antibiotics and Steroids. Thursday morning it became apparent that he was not going for surgery on Friday. Now that it was established that he had Mycoplasma, surgery could not be scheduled for 6 weeks. So Brett’s surgery has been rescheduled for mid May.

The whole house ended up with Mycoplasma, and that stuff was brutal for Brynn and Brett. Pretty mild for everyone else, except Abigail’s ear infections. Brynn’s seizures were irritated by being sick. He was given oral antibiotics, as he cannot take steroids due to psychosis reaction to them. He is returning back to normal baseline now, and for that we are thankful.
Brett is also doing pretty good now, his asthma reared it’s ugly head but seizures have returned back to his baseline already. I will keep my eyes on the road, keep my heart on the goal and keep moving forward!                                                             

We were working today on adding and subtracting fractions. It was wonderful to see that “Aha Moment” in Brynn, when he beamed as he said 1/2 + 1/2 = a whole!  It has been a while since I got to see such a big Aha Moment in him, very refreshing after such a bad few weeks! I have been doing the Sequential Spelling with them both again. Brett has no problem in Spelling except those “little sparks” that make him write the word wrong when he knows how to spell it. Reading

is an issue as his eyes will not work the way they need to, likely a result of the Convergence Insufficiency and his Occipital Lobe Epilepsy strong focus fighting to keep him from being able to see correctly. Math seems to cause Brett to struggle most, especially once he looses focus or gets frustrated. Comprehension is good when I read to them both. Brynn is still struggling in Reading, even at an early second grade level.

I suspect that his Convergence Insufficiency may be the root cause complicating his lower IQ and Cognitive Disorder NOS. He knows some bigger words by sight from memory, but really doesn’t seem to have the memory and processing capabilities for much higher “Fluent”  reading. He does perform well at the 3rd Grade Math level, verbally and working in group, as long as we stay in the same area long enough and revisit often. I think we will stay on factions for some time now… with some multiplication mixed in! It is working well to do Brynn and Brett’s home School together. As for the circles I seem to be going in, I have accepted that at least for now this is just how it will be. I can make changes to better the experience. If I am going to go in circles, I want them to be filled with as much love, peace and joy as possible! Here’s to more of those things for our family!            

In His hands…

the mental capacity or faculty of retaining and reviving facts, events, impressions, etc., or of recalling or recognizing previous experiences (dictionary.reference.com)                 
For in this hope we were saved.
   Now hope that is seen is not hope.
       For who hopes for what he sees?
            But if we hope for what we do not see,
                    we wait for it with patience. –
Romans 8:24-25 
    I find myself reliving the old memories, I would much rather forget. Watching Brett’s Epilepsy get out of control, the medications not stopping the seizures, watching him struggle to do what he would have said was “baby work” two years ago and the fear of what could happen is at times more than I think I can bare.

Yesterday, Brett had a bad. He was eating lunch and his head dropped hitting the counter. Eyes rolled back, drooling, unresponsive for what seemed like an eternity. After a few moments he raised his head looked straight into my eyes until the rolled up and to the right. Both arms started jerking… His eyes came down as he babbled nonsense words lost… completely lost in a seizure…..   
Of course it is not me who should carry this burden, at times it is difficult to put all of this in the Fathers hands and leave it there. It’s more than I can handle and there is nothing I can do to fix it. All I can really do is surrender it to the Father and trust Him and Him alone.
Two more Complex Partial seizures followed, rescue medication given…
I thought he seemed okay three hours later and traveled to town to pick up a few things. In the parking lot a Tonic Clonic occurred… Made it home with my
now wobbly and confused boy… only to see him endure 5 more seizures…

Aftermath… I sit here sometimes and I get so frustrated. Hearing Brynn stomp loudly enjoying the pleasure of making noise, tap with and on just about everything, yelp & bark... I sit frustrated and then I think back, realizing what a battle he has been through. Realizing how blessed we are they he is doing so well. Realizing just how special he really is. It’s hard sometimes to look at this BIG 14 year old boy and accept him where he is. To accept that to him it is perfectly acceptable to get such pleasure from such noise making adventures. I am his Momma and I have to remind myself at times that he may be 150+ pounds and although he has hair on his upper lip, his brain has not caught up with his body. I do worry will someone be able to see him as the beautiful blessing he is, a child at heart when I am gone. I watched him gain and loose so many things over his lifetime. I watched as parts of him slipped away and never returned. I watched his struggle and I fought to keep him, every part of him here with us. I struggle not knowing with every seizure what memories may be lost or what parts of my sweet Brett may return    

Rejoice in hope,
      be patient in tribulation,
             be constant in prayer

-Romans 12:12 

I find myself in struggle between Brett’s now and Brynn’s past.
I struggle because we have been here before. We have seen what can happen. What we are seeing Brett struggle with Epilepsy worse than Brynnon was at this point. Brett was a year ahead in his home schooling, over the last two years he has regressed to struggling to work at grade level. At this moment he is likely almost a year behind in some areas. Brett’s loss of ability is more profound as Brynn was never ahead on anything or even on level. Same age, 9… Same seizure types… Same behavior… It was horrible enough to see it once. My heart breaks even thinking that I am watching it all over again and knowing that there is nothing I can do to stop it. I thought I knew what it felt like to watch a train screaming by at 100 miles an hour toward a broken bridge. That is exactly what this feels like. One thing that comes from struggle, from pain, from any battle is FAITH. 

Reminding myself tonight that my strength doesn’t come from within myself, it comes through my faith the the Father. My Hope that everything is going to be okay… in HIS time. All those years I spent wondering around in the dessert, I had no idea I was being trained for battle. Just when I thought I may be home free, all relaxed and ready to settle into the promises… I came across this wall called ePiLePsY. It’s huge, it can be deadly, doctors dont know how to take it down, no one knows why it is there, when it was put there

… but we DO know that the Father knows. Not only does He know, but He has the master plan for these precious Epilepsy Warrior Boys He has blessed us with. Now some people think faith is looking at a situation and expecting the Father to move fast and fix it. No, faith is putting the situation in His hands and trusting HIM to do with it as He wills. That is exactly what we intend to do…


Fund Raising Flier

Both brothers have numerous life altering seizures. Brett recently went through a day of experiencing 14 seizures and Brynn, regardless of medications and a VNS implant, still experiences unpredictable seizures. 

About The Family
“We’re doing all we are able and we are on the right track. A seizure service & alert dog for the boys will give them a sense of safety and increased confidence while giving me much needed Peace and stress relief.” says mom Denise.
They are winning because they have a strong support circle surrounding them. Their mother, Denise is a strong prayer warrior believing in healing and standing in Faith. Their dad, Brian is hard working. The Brothers also have four other siblings. The family has the National Seizure Disorders Foundation, our resources and support at a moment’s notice.
Consider the life these brothers lead.  Their seizures, although diagnosed, are uncontrolled and unpredictable. This leaves the whole host at unrest. The family needs peace, mom needs rest, and the boys need healing.

What You Can Do
National Seizure Disorders believes to achieve positive seizure management, the only true and positive journey to healing with seizure disorders, one must believe and practice Hope, Faith, and Love.  Among these, Love is the emotion that heals.  Brynnon and Brett need the Love of those around them, those that know them, and strangers right now.  Everyone reading this has the opportunity to Love these brothers through positive thoughts, prayers, donation, and sharing this story with others.  National Seizure Disorders Foundation has made it easy to donate.

We are Fund Raising to get the boys a Seizure Service Dog!! Brynn and Brett are sponsored by: 

The National Seizure Disorders Foundation  http://nsdf.us
Please Find, Like and Share: http://Facebook.com/EpilepsyWarriorBoys

Feeling Lost in Familiar Territory…

As a parent in my younger years, I would worry about such different things. Even without considering Epilepsy, life was different then. I remember my oldest child being so clean. Never letting her experience getting dirty, playing in the mud or even splash in a puddle. There is clear photo evidence that with my second oldest child, I relaxed as a parent and he did get dirty. I am pretty sure that my third child was the first to actually play in the mud and when they all played blissfully, sitting joyfully in a big mud puddle waist deep… I learned that it does indeed come off. By the time Brynn, our fourth child was born just about anything was game. It was like I had a different kind of child. He would spend hours playing in the dirt with his trucks. He was all over the place… so much energy… so much determination… He would literally fall asleep standing up and wake up running. When Brett came along I clearly remember thinking that he too was in Bryan’s league. He had that same hyper, curious look in those same big blue eyes from early on. 
Ah, those blissful days of not knowing what was going on… 

It is the Lord who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed. 
(Deuteronomy 31:8)

I watch and listen in the quiet of the night… 
A jerking hand, a leg twitching… a gasp, snort, giggle, a moan or grunt… 
Things I would have never heard 3 years ago take on a whole new meaning. Listening and watching… hand raises, eyes open, pupils dilate… Will he pick at the blanket? Will he chew a hole in his inner cheek or will it be his toungue? Will it stop or will it go on? I feel like I am reliving a nightmare. It is so much worse when you already know what can happen. I don’t want to watch, I just want it to go away. I don’t want to see his sparkle taken away. I am out of my comfort zone. 
Feeling lost in a place I have never been before, yet it feels familiar…

The Lord is a refuge for the oppressed, 
a stronghold in times of trouble. (Psalm 9:9-10)

Just like in my early days of Motherhood when I thought I knew it all… Here I am once again, questioning all I know and learning more about Epilepsy and seizures than I thought possible. I found out after the first two children that playing in dirt was actually good for them. Who knew that getting dirty actually was healthy for children? I found out with Brett’s diagnosis that a simple Partial seizure can be just as frightening as a Complex Partial. I found out too that I don’t know as much as I thought I did about Seizures. For the first time in a long time, I find myself questioning what I have missed in Brynn. Brett is teaching me so much about seizures that do not have stiffening, shaking or postering involved. Visual disturbances, floating and odd feelings seem to be a big part of his days.

Who knew a child could feel this way and they actually think it’s normal? I would like to go back someday to those giddy days of parenthood when my heart didn’t skip a beat every time I  heard an odd sound through the monitor. I honestly don’t remember what it’s like not waiting for the big one… To softly, gently drift off to sleep without a worry, besides how to remove the dirt from that new Elmo shirt. Epilepsy has stolen a lot from our family. It has stolen parts of Brynn that we can’t get back. It has stolen time, laughter, peace… I can only pray that whatever this is can be stopped in Brett. My heart hurts looking at his sparkle flickering… It hurts to even think that seizures could at any moment take his sparkle away… It’s like watching a train move slow motion straight for a mountain… when you can’t see the opening. I cry out to the Father, please let that opening be there, please don’t let this do to Brett what it did to Brynn. Daily, I struggle to keep it positive, no matter what… I did find out how to remove the mud from that new Elmo shirt. Just a long soak in the sink and it was gone. Much like that mud stain, it will take time to let Brett’s diagnosis sink in and become clear. Likely, Much time will pass before we have full answers and prayerfully one day we will all be able to not worry about seizures… I have never had a sense of direction. When I get lost I have no way of determining where I am or how to get where I need to be. Recently, this led to me being lost for an hour in one smaller part os a larger city, thinking I was somewhere else. In this situation, the worst thing you can do is keep driving. Without assistance from anyone, you make it worse by getting further disoriented and likely driving away from the solution. Looking at the map when I got home, it was easy to see what I had done. Such is our Epilepsy journey. With a great Doctor, Brynn’s history and Brett’s diagnosis we will have to work together to try to get this figured out and be where we need to be. I don’t just want to know the genetic side of things, now I “need” to know. Most of all I will be depending on God to keep us sane in the process. It’s a scary place to be… but with God’s strength, mercy, grace and peace we can too get through this.    

Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings. (Psalm 61:1-4)

November is Epilepsy Awareness Month.
If you would like to send Brynn and Brett a card or a letter, email me at:
 PrayerOfFaith4u @ gmail . com (no spaces) 
with “Epilepsy Warrior Boys” in the subject and I will send you our P.O. Box address.

If you would like to know more about this newly revealed seizure type for us, (Simple Partial) this is a great resource:   

Peace I leave with you; my peace I give you. 
I do not give to you as the world gives. 
Do not let your hearts be troubled and do not be afraid. 
(John 14:27)