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)

Tomorrow is Brynnon’s 14th Birthday!!!
On this day it was at 2 AM exactly 3 years ago that my life changed forever. Brynon had experienced his first known 5+ minute Tonic Clonic Seizure in Jan. 2009. We were told that everyone is allowed one seizure and he wouldn’t have a seizure while sleeping again, it was very rare. We were also told it would be very unlikely that he would ever have a seizure again if he remained seizure free for a few weeks. After a year, we could no longer worry… 

Fire engine came just as he was entering the postical stage and his body in a deep sleep finally starting to breathe… 
The intense Fear of the unknown was overwhelming… 

I watched Brynn sleep for several months on that sofa bed and began to identify different seizure types. I learned fairly quickly that he was seizing almost every night and that not all seizures were Tonic Clonic. In the year that followed I researched and learned more about Epilepsy than I had ever believed possible. I learned too that Moms have an instinct that no one else has when it comes to their precious children. I also learned that this wasn’t a simple take your medicine and it will go away issue.

This was a fight for answers battle that continues to this very day. My sweet little boy said he wanted to die with the first med… the second helped but did not give complete control… I went for a second opinion when the neurologist he was seeing wouldn’t answer phone calls and didn’t even take the time to read his 24 hour Video EEG before our visit 2 weeks after the test. The New Neurologist hit the nail on the head before any testing was even done, based on seizure history, Neuropsychologist report and all his medical files that were sent before the appointment “I believe your Son has Malformations of the Cerebral Cortex.” We did his fourth Video EEG and it was confirmed, the prior neurologist was completely missing some important information. The third medication had the same effect, helped but wouldn’t completely make the seizures go awayAnother EEG confirmed that Brynnon is “Refractory and his EEG’s looks like Encephalopathy.” Fourth and fifth medications had the same effect… Refractory or Intractable Epilepsy means that medications either do not work well or do not work at all in treatment and prevention of seizures. Sadly, about 1/3 of all Epilepsy Patients will become Refractory at some point. In Brynnon’s case, long term untreated seizures likely caused him to remain refractory. I have experienced a lot of pain in the past three years… but I have learned so much about myself in the process. I have learned too that Abba Father certainly knows exactly what we need and when we need it. I have learned to dance in the rain of uncertainty as well as how to let go of things that I have no control of. Most of all, I think I have learned that ignorance may be bliss, but it also can be dangerous. I am forever grateful to God for giving me the strength to move forward… I am also thankful for everything else I have learned… 
 I have learned what Seizure Sick looks like… 

 I have learned what the VNS can do, as well as what it cannot do… 

 I have learned that you have to work hard for the things you need, and depending on other people is not a good idea…. 

 I have learned that even even a medical professional saying the “R word” can be painful… 

 I have learned that some seizures are invisible…  

I have learned that Doctors can be uneducated too… and worse, they can be wrong. Always follow your gut and demand answers…  

I have learned that Epilepsy can affect more than one child of the same family and when it does wanting answers to WHY becomes priority more than ever before…

 I have learned that we may well feel like running from difficult times, and if you insist on running… Pleased do run in the right direction… 

 I have learned that seizures can go unnoticed even by medical professionals without the proper test…

I have learned that God gives us exactly what we need to get through trials and tribulation, sometimes they come in unexpected packages…  

 I have learned that capturing smiles is a lot more fun than capturing seizures in pictures and videos… 

 I have learned that sometimes being silly is the only way to learn to smile through and fight the seizures…

I have learned that God sends special people in your life, exactly when you need them. Friendships come from unexpected people and in the midst of tremendous storms… those sweet blessings never fade from memory…

 I have learned that a picture can tell a powerful story, but it cannot really tell the whole story… 

I have learned that our children will grow up to be men one day,

and what they see they will   repeat…  

I have learned that it really is the simple things in life that brings the most pleasure and the most precious memories… 









The past three years have brought a roller coaster ride that I never wanted to get on. I fought and cried to get off many, many times… but as everyone does, I had to learn that everyone has their own journey. It doesn’t matter what your journey brings, it matters where it takes you. Trying to remain focused on the positive in any situation helps keep peace in the midst of the most terrifying storms. Strength doesn’t come through cowering down, it comes through fighting through the storm, no matter how powerful it seems. I have learned many things in the past three years. Some things I had to fight for, some I had to fight through, some I wish I learned so much sooner and some still that I wish I never had to learn. I wish to thank all of you Epilepsy Warrior Mommies and Daddies… May God grant all you other Epilepsy Warrior Parents the strength to continue to push through. Your love and support through my journey has brought me so much knowledge and wisdom as well as strength.  
“2 Cor. 1:2 Grace be to you and peacefrom God our Father, and from the Lord Jesus Christ. 3 Blessed be God, even the Father of ourLord Jesus Christ, the Father of mercies, and the God of all comfort; 4 Who comforteth us in allour tribulation, that we may be able to comfort them which are in any trouble, by the comfortwherewith we ourselves are comforted of God. 5 For as the sufferings of Christ abound in us, soour consolation also aboundeth by Christ. 6 And whether we be afflicted , it is for your consolationand salvation, which is effectual in the enduring of the same sufferings which we also suffer : orwhether we be comforted , it is for your consolation and salvation. 7 And our hope of you isstedfast, knowing , that as ye are partakers of the sufferings, so shall ye be also of theconsolation.”

~Denise

Every now and again it is good for the soul to do a little emotional inventory. In the church years ago, I was taught that emotions are just feelings and not to pay any attention to them. I have learned over the years, it is imperative that you do pay attention to them. The emotions are so often overlooked in the run for perfection feeding the intellect and the will of a person. If you leave emotions out of the equation, you end up taking action without evaluating how you feel about it. We may want to do something, the will says yes, but the emotions are there saying no… 

Please don’t! Tonight, I find myself thinking about so many different things. I find myself feeling all sorts of emotions. Brett went for his first neurologist visit today. He will go in a few weeks for a Video EEG & MRI. It is a strong possibility that he is indeed having seizures. He will return for an extended 48 hour Video EEG as soon as the can get the insurance approval and the appointment scheduled. His answers will come, and there are a lot of emotions that I am feeling about it all… Seems a bit overwhelming at the moment, I have so many other emotions to deal with at the same time. Gosh, it makes me so mad… Just the thought that seizures may have 

been overlooked by medical professionals once again, now in Brett is taking it’s toll on my sanity. We have been through so much these past few years in this Epilepsy battle. I refuse to give up hope, I figure worst case scenario if Brett is diagnosed with Epilepsy and is similar in any way to Brynn… Perhaps it will lead to answers as to WHY and prayerfully better solutions.

 So, my emotional inventory is being worked out as I type this. We will get through this valley as all the others that we have been forced through. Not only will we get through, but we will get through and come out stronger than ever before in faith and willingness to fight. I am a human being… I get mad, I cry and I laugh for lack of anything else in good times and bad. One thing I try to do is hold on, knowing that God would never give us more than we can handle. I just know that there is a reason and a purpose for all things, and all things work together for good in those that love God. Brynn’s seizure count for August 22, much better than last August bringing 65! Keep the faith and try, try, try to stay positive! I will post an update when  I have more answers!

• 2-4 years behind in cognitive development which could include math, language, short attention spans, memory difficulties and delays in speech development.
• Social Relationships are often impacted. The MID child may exhibit behavior problems, be immature, display some obsessive/compulsive behaviors and lack the understanding of verbal/non verbal clues and will often have difficulty following rules and routines.
• Adaptive Skill Implications. (Everyday skills for functioning) These children may be clumsy, use simple language with short sentences, have minimal organization skills and will need reminders about hygiene – washing hands, brushing teeth (life skills). etc.
• Weak Confidence is often demonstrated by MID students. These students are easily frustrated and require opportunities to improve self esteem. Lots of support will be needed to ensure they try new things and take risks in learning.
• Concrete to Abstract thought is often missing or significantly delayed. This includes the lacking ability to understand the difference between figurative and literal language.“                                                                                                                                     Source:  http://specialed.about.com/od/handlingallbehaviortypes/a/MID.htm                                                                                                                                    
  Cognitive Disorder NOS Symptoms and Diagnosis Overview:
  Cognitive Disorder NOS symptoms and diagnostic criteria follow below. While some of these Cognitive Disorder NOS symptoms may be recognized by family, teachers, legal and medical professionals,  and others, only  properly trained mental health professionals (psychologists, psychiatrists, professional counselors etc.) can or should even attempt to make a mental health diagnosis. Many additional factors are considered in addition to the Cognitive Disorder  NOS symptoms in making proper diagnosis, including frequently medical and psychological testing considerations. This information on Cognitive Disorder NOS  symptoms and diagnostic criteria are for information purposes only and should never replace the judgement and comprehensive assessment of a trained mental health clinician.

  Cognitive Disorder Not Otherwise Specified

  This category is for disorders that are characterized by cognitive dysfunction presumed to be due to the direct physiological effect of a general medical condition that do not meet criteria for any of the specific deliriums, dementias, or amnestic disorders listed in this section and that are not better classified as Delirium Not Otherwise Specified, Dementia Not Otherwise Specified, or Amnestic Disorder Not Otherwise Specified. For cognitive dysfunction due to a specific or unknown substance, the specific Substance-Related Disorder Not Otherwise Specified category should be used. 
  Source: http://www.psychtreatment.com/mental_health_cognitive_disorders_nos.htm
  and finally….
   Recurrent, spontaneous, unprovoked seizures—that is, those associated with epilepsy—affect 3–5% of the population worldwide.^[32,55] The incidence of epilepsy in childhood varies among different age groups and geographic locations. Data from a variety of epidemiological studies have indicated that recurrent unprovoked seizures occur in 1–2% of children, with the highest incidence in the 1st year of life. The incidence of epilepsy plateaus in early childhood and decreases after 10 years of age.^[17,31,33] Approximately 10–40% of children with epilepsy will continue to have seizures despite optimal medical management with AEDs.^{[13,16,25,57]} It is important to be aggressive in the diagnosis and treatment of medically refractory epilepsy in children given the adverse effect of recurrent seizures on early brain development, learning, and memory. Moreover, young children with this intractable disorder may be better candidates for aggressive surgical treatment because of the increased neuroplasticity of the developing brain.^[19,23,71] Other treatment modalities, such as a ketogenic diet and vagus nerve stimulation, can be considered in children who are not good candidates for epilepsy surgery.^{[34,41,44,54]} In this paper we review the definition of medically refractory epilepsy and consider the evaluation of children with medically intractable seizures for surgery. 
  Source: http://www.medscape.com/viewarticle/581652
  The above are descriptions of Brynn’s diagnosis to date. Home Schooling does not cause lower IQ. Epilepsy cannot be faked with recorded Video EEG Clinical Seizures. So for the two hateful, spiteful ignorant people that persistently talk about my child as though you know what your talking about…  Why don’t you get a life and stop pretending that you ever cared. 

 I have been congested in my chest the last 2 days. I hope it will go away after I get some over the counter stuff… Abigail is being such a cutie… Gosh, she is getting so BIG. It is hard to believe it has been a year and a half since she was born so small… She has gotten taller these past few weeks, and actually looks like a little person now, not too much a baby anymore. What a blessing she has been in my life, I am so thankful to have her to hold… she is such a snuggle bug! Bought her a few things for her Hannukkah gift. A block sorter, wood train and some big blocks. Bought a magic set for Brynn or Brett too. Haven’t decided which one to give it to. Can only afford to spend about $30 for each person. Found Janice and Tera something that I think they will both like. Haven’t figured anything out for Bri and Brandon either. Figured I can just do a little for each one… 🙂 Wish there was a Dirt Cheap close by!

I have thought a lot this past week about how much we have been through this year. Some good and some not good… So let’s begin with a recent good thing… A few weeks ago I got a phone call. It was a fellow Mom who I met through craigslist (of all places) about 3 years ago while expecting Abigail. I bought a swing from her. She gave me in addition to the swing bath towels, some clothes, a bouncer seat, cloth diapers, burp cloths, toys… It was a greater blessing than she could have ever realized. I was on that very day we met going for my 2nd mammogram while pregnant. I had something behind the nipple that could have been cancerous. My symptoms started soon after finding out I was pregnant. We had health insurance, but as most of you know that doesn’t mean free health care. Thank Abba Father, I convinced them to wait it out and when I returned a few months later for the 3rd Mammogram it was GONE! We were overwhelmed with the medical cost, the addition of a 6th child when we were struggling with the 5 we already had. A cancer scare on top of that was just really stressful. So, needless to say this gal was a real blessing. I added her on facebook and eventually we were sharing there and over the phone. So, she calls a few nights ago and says that she wants to ask  a question. She proceeds to say, I want to do something for your family… one time, within reason, whatever your family needs most. Well, that is a question that I have never been asked. I was perplexed… I mean this is a one time thing, what do we need the most. My Husband answered it as quickly as I asked and that’s the answer I gave… More than anything else, my children‘s greatest need is clothing and shoes. More times than not my children‘s clothing and shoes come from Thrift Stores. There is nothing wrong with living this way, it gets us by… but the clothes that the children have are worn and often not correctly sized. I am not sure if y’all have noticed, but through the years and brands clothing sizes change. To add to the misery of trying to clothe them this way, Brett and Brynn are “oddly” shaped and it is hard to find clothes to fit them, much less in a thrift store with only so much to choose from! My children do not get “gifts” very often from people for Holidays, much less just because. The younger four have never know the kind of Holiday gifts that the older two had. Money does not stretch like it use to and there is only so much to go around. We do try to treat them to special “gifts” when our income tax refund comes in. It’s about the only time we have extra money to buy a toy, bike or a wanted item that we normally couldn‘t afford. We also budget carefully for the higher priced items and save accordingly. This is how we acquired Brynn’s iPad, the other boys iPods and the big items we do have. We were responsible with the money from the sale of the property a few months ago and did not spend any of it frivolously, besides getting Pizza and Brynn’s much desired Chili’s meal :). Sadly, we did just move away from our much loved Neighbor (Jackie) who did so much for the children, she was more like a  Grandmother to them than anything they have ever known. She kept Abigail looking beautiful 🙂 and would often buy for Brynn and even Brett. When she knew we could not afford to buy Brynn clothes and he gained so much weight with the Depakene one year to the next for Med Camp, it was Jackie who blessed Brynn with new jeans for Camp. I don‘t think he will ever wear another brand! Before she came into our lives, my children didn‘t know about receiving things from anyone but us, with the exception of a rare relative or friend here and there. I guess that is what my Momma would have done all these years or she could have gone with me to the thrift stores! I am sure if she would have still been alive I would not have strayed as far from my family and them from us as we all have. I see that in a lot of families now, I suppose it’s not like it use to be for anyone anymore. Perhaps technology and the business of the world has hampered and destroyed good ole family values. Long gone are the Family bar-b-Que’s of long ago, where family gathered and shared their lives, their children and their food. I tell you what, I would give anything to go back and redo the past with my family. It’s so sad that one person missing from the bunch can cause such discord and separation. I will be looking forward to the children experiencing a “Pay It Forward” experience. I am sure it will be a life changing experience for them that they will cherish always. Someone that has never even laid eyes on them, other than in pictures, wants to provide them clothes… How awesome is that? In thinking about that question, it raised a lot of interesting thoughts between a “Need” and a “Want.” There are lots of things that anyone would want! If I presented that question to the children Brynn would likely say a 3 wheeled motorized bike, Brett would likely say a new home computer to play games on… Brandon would likely say he doesn‘t know, but secretly he would want itunes or xbox stuff. My boys all know well about giving. They also know the difference between needs and wants. Brynn and Brett earn $5 a week for being good family members. This includes everything they do for cleanliness, personal hygiene, home school and helping others. Each day they fail to meet their responsibilities in any way they loose $1. This is how life works after all. It is interesting to see what they do with their own money. Brynn will often buy things from Brett. Brett will save his money, all of it… and only wants to buy memberships in “Animal Jam.” There are a few things that our family needs, perhaps with the help in clothing we will be able to work on some, like dental as Brett, Brian and I all need to have some teeth pulled!      
Just when things were getting somewhat “Normal” and oddly cozy back in MS… We went back to Children’s again to have Brynn’s VNS adjusted. We will return in early February to do it again! Praise Abba Father, it was a very easy and productive trip. We are going to wean Depakene, tonight completes our third week!! YAY! I have wanted to try this for some time since he has been maxed out on it for a year now. So far it has been good, only side effect are more myoclonic seizures and cognitive slowing. He has always been refractory and had a “honeymoon” with medications. Once a drug is introduced, he tends to do well on it for a while staying at his “Normal baseline” of 3-4 seizures a week. Then his body gets used to it, his brain figures out a way around the med (whatever the actual cause is) and he begins a steady increase again. Onfi will be his next drug. I have good feelings based on what I have read. Since Brynn has done really well with using Klonopin for Clustering and Ativan for continuous daily clustering, I feel that another benzo may be the answer that will bring long term relief. Hey, it’s hope at least… Anything is better than the dreaded “He’s never going to be seizure free.” I somehow get that, and even accept that now. I remember being so mad that his Neuro even said that. So frustrated that a Dr. could give up… Now I realize that his Dr. never gave up. His point was that in refractory Epilepsy, no medicine is going to stop every seizure. That is what refractory means.
Websters Dictionary Defines REFRACTORY

So, the reality it seems, is that indeed Brynn “may” never be seizure free. A miracle could happen at any moment and he could never have another seizure too. All we can do is try to alternate his medications to keep him at his baseline or better. Only Abba Father knows when he will stop seizing, I am okay with that now. I have faith that his life is in Gods hands, and I have security knowing I have done everything I can do for him. So, onward we go… into the New year 2013 may be our year. Starting over again, at least this time we are back in Mississippi. It feels peaceful here in Mississippi. There is a tranquilness in the air that touches your spirit, your heart and your mind like no other here. Things are in progress to move forward into our lives with great anticipation of a future yet to be seen and realized. I just pray that this time Abba Father will see fit to bless us with the stability and perhaps eventually, a forever home to call our own, somehow… someway… It is will great gratitude that I wake up each day here back where I feel at home. I have taken the Father’s hand in a mission to go forward in dealing with the past and finding my happy place again. So I end this by saying “Happy New Year” to all of you who follow… May 2013 be the year for Truth, Justice and Healing for all! Don‘t forget to keep the faith and never ever take your eyes off the mark… ~Denise
   

This Momma is burnt out with lack of sleep, stress from many sources and Brynnon’s seizures on top. I will be taking some time to get the house organized, get my life in order spiritually as well as physically and focus on the important things starting now. I have been thinking about Brynn and his future a lot. Realizing that I am going to have to take care of him as long as possible and have everything in place for someone great to take over should my life’s purpose be complete. Obviously, I need to drop some weight, eat healthier, rest more and get rid of some of the stress in my life. I intend to make this the year to do just that. I mean it’s bad enough that I am 40 with a 1 year old! I will turn 62 just days after Miss Abigail Sariah turns 21, geeezzzeee…. I quit the biggest addiction I ever had just before my 40th birthday in July, smoking. I have gained almost 20 pounds in doing so though, and it’s not like I was skinny before! Cut calories and exercise I must… Unless I can cut corners and do what seems to be the in thing now and go have gastric bypass! Which I could not afford, so I am gonna have to do it the old fashion way… Good ole diet and exercise. Was talking to a friend a few days ago and she reminded me about the Blood Type Diet. I gave it some thought and I think I am going to go back on it. It did help the Fibro and I know it will help with the weight also. I use to walk 4 miles 4 days a week, before Fibromyalgia kicked my butt… but there has to be exercise I am able to do without causing much turmoil in my poor aching body… I know that not getting adequate sleep night after night is not helping the weight nor the Fibro, but what’s a Mom to do? Stress… oh the stress has got to stop, I know I am on my way to a heart attack and life long blood pressure problems if I don’t nip some of the stress like NOW. Enough is enough… and believe me I have had enough. I am going to focus on changing what I CAN CHANGE, and believe in faith for what I cannot change, knowing my Abba Father CAN.  

Sid and the Van

I am Sid.
I can fix a van.

The van had a bad fan.
The fan hit the van.
I can tap a pin into the fan.

I see bits on the fan.
With a rag, I got rid of the bits.

I did fix the van.   

I have always been impressed with Brynnon’s ability to pick up on sequential information. I had no idea why, and still do not completely understand it, but it works for him and that is all that matters! AVKO Sequential Spelling has taken him so far in Spelling… I wish he could Read the words he Spells. The brain is a complex and amazing organ. The only answer I have as to why he can Spell a word and not Read it is his wires are missing. His cognitive disability makes it impossible to make that connection. I learned the most from this video I found on you tube while researching Fragile X. It is 80 minutes long and I have watched it a few times. I think about this video all the time as I teach Brynn. What was so frustrating to me before, now makes sense!     

Brett is doing wonderful with his Reading. He read Fox on Stage by James Marshall this week. He is enjoying Reading more with each new story. I am using AVKO Sequential Spelling with him as well. I think it’s a great program for anyone!  Brett has taken a fondness to Brandon’s Electric Guitar. He is spending a lot of time with it lately. 

  It breaks my heart for Brynn to see him advance, knowing that he is being left behind. Brynn had a really hard time when he heard Brett read and realized that he couldn’t read the same stories. I explained that some people are just better at some things than others. Brett cannot take apart a Television and Brynn can.  🙂 This seemed to make him feel better and I have seen a greater confidence in Brynn as he works on his Reading too.  

 Abigail is up to 23 pounds, not bad from 4.11 at birth. She is getting so big… She is counting everything and singing… Such a happy little girl. What a blessing she has been!  She is pretty active and is in the habit of staying up way too late with me watching Brynn… If she sees Brynn move on the monitor she will say uh oh Brynn okay. Children learn so much, even when we think we are not teaching them! 

Brandon (16) and Abigail (20 months)

Brynnon (12)