Saturday, December 12, 2015

Obstacles are those frightful things you see when you take your eyes off your goal.

     We've had a rough week.  Two absence seizures this week.  Monday and Thursday.  We knew it was coming and Dr. Robinson has tried to prepare me for this and yet I still lay here in tears! 

     Puberty can trigger seizures in kids and I think we are starting to see it in Braydon.  I know everyone does not understand so let me explain.  Braydon has generalized genetic epilepsy.  Which means his entire brain is affected not just one lobe.  He can have any type of seizure, although for him we've only ever noticed absence seizures and tonic clonic (grand mal) seizures.  His neurologist has told us that over the years he's probably had mild other types that have just been looked over.

     Absence seizures can Happen quick and easily go unnoticed.  They are when the person kind of drifts out of consciousness and stares off into space.  During this, usually brief time period he has no clue what is going on around him and when he comes out of it time is lost.  Whatever happened while he was out is done and he is confused.  After the seizure he feels extreme confusion, panic, headache, an upset stomach and becoming sleepy. 

     He is finally to the point now when he knows if he did or did not have a seizure.  He can recognize the signs afterwards and told me he is really getting good at feeling them coming on. 

     I'm super stressed that we are at the point that they will be more common.  His Dr is super pro active and after the first one on Monday increased his meds.  It's something we will get through and in the end will be fine.  It's just the road is a little bumpy. 

     God has our back and will continue to keep us strong.  Braydon will continue to grow up to be this crazy intelligent quirky rule follower. 

    I hope everyone has a seizure free holiday!!

    

Monday, November 2, 2015

Begin at the beginning and go on till you come to the end: then stop.


 
Well, my boy has on a jersey.  Crazy right??  We made it the entire football season seizure free.  Well almost, we still have one more game, so knock on some wood for me ok!! 

He made me prouder than I think I could have ever be.  Only because he never gave up even though there were days he really really wanted too.  It was crazy tough and I cannot believe that we made it.

So lets talk about the coaches for a second....whoo whee the coaches lol!!  There were some days I wanted to walk on to that field and punch them square in the face.  The mom in me wanted them to care that Braydon was epileptic and needed "special care".  The epilepsy warrior is both B and me is very glad that was never used a crutch and no one ever treated him as the epileptic kid.  They pushed him harder and harder every day not allowing him to give up even when is body physically quit working.  He collapsed on the field a few times and they made him get back up and just do it.  The mom was angry the warrior was proud.

Braydon said several times his decision to play football was to prove that an epileptic kid could play football and he did....he proved it.  Whether or not he plays next year remains unknown.  Our decision to play did not come lightly and still might have been the wrong decision.  But at the end of the day it was ours.

Over the years I'm learning to let him be a kid and allow him to make the decisions that he wants.  It is very hard to let it go and let it be.  Every decision made could be the wrong one.  One late night could result in a seizure he doesn't wake up from.  One missed dose of medication could result in a seizure at school that causes him to hit his head and lose control of his bladder in front of 30 classmates.  But I also have to know that these are things that he will have to control as he gets older.  I wont always be there physically to help him, i will always emotionally.  

My family is a family of epilepsy warriors.  Shawn and I constantly make decisions based on epilepsy, Claudia is Braydons "care taker" when mom and dad are not around making sure if he has a seizure she knows what to do.  

Our lives were forever changed the day Braydon had is first seizure.  We are a family of 1 in 26.  We will win, we will advocate and we will raise awareness.

To all the families who lost a warrior, you are my biggest fear.  I pray every night to never be a family with a lost warrior and I will continue to pray for the lost warriors. 

Sunday, August 23, 2015

Fear is the path to the Dark Side. Fear leads to anger, anger leads to hate, hate leads to suffering.



     I am going to be 100% honest right now and tell you this is a hard post to write.  Not because of anything bad but because of the backlash I might get.  I'm open to your opinions but I will not tolerate negativity. 



     Shawn and I made a choice this weekend.  A choice to allow Braydon to enjoy his life rather than fear his epilepsy.  Braydon will be playing football for Rossview Middle School this year.  His neurologist has told us no football because of the risk of concussion. 

      This was not a decision that we came to lightly.  Ive thought for weeks and I mean weeks.  Braydon wants to play and he is a great kid.  He is extremely respectful, kind, and a rule follower like you wouldn't believe.  I have done my own research and decided that this was one case where mother knows best.  He wants to belong to a team, he wants to play football, he wants to be a kid. 

      I spoke with the coaches of Rossviews team and our immediate family and have received nothing but support which I am very grateful for.  We are very excited about this and cannot wait to start a new journey.  Am i nervous?  Absolutely Am I scared?  Absolutely  Am I thrilled at the smile on his face when he told his best friend?  My heart melted. 

   On an even cuter note, Claudia will be a Rossview Middle School Cheerleader and I cannot wait to see her cheer on her big brother.  I promise to keep you all updated and let you know about his games and practices.  The Fowlers are not allowing epilepsy to rule our lives, we are ruling epilepsy. 


  Here are a few of the links I have used to make my decision.

 

What about group activities or sports?

Children and teens with epilepsy should be encouraged to participate in group and competitive sports, such as Little League baseball, community sports, and varsity sports at school. These activities are usually well supervised.
  • When appropriate safety gear for the sport is used, most children with epilepsy can safely participate without special accommodations.
  • Most important, group activities are part of childhood and foster a sense of "belonging," high self-esteem, and independence. These benefits are extremely valuable, and usually outweigh the risk of injury. 
  • Most potential hazards can be overcome. In fact, players with epilepsy can be found in major league baseball, ice hockey, and other professional sports.
  • Serious injuries in children with epilepsy are uncommon and rarely occur during participation in sports. Believe it or not, bathrooms are much more dangerous to children than playing soccer or ice skating.
http://www.epilepsy.com/learn/seizures-youth/about-kids/playing-sports-and-other-activities

What about contact sports? Again, it depends. If your child is prone to seizures, a loss of consciousness on the football field might be risky. But if the medicine is working and seizures are under control, then the risk of having a seizure on the field is really quite low. Some parents worry about children with epilepsy being hit on the head. There isn't any evidence that the brains of kids with epilepsy are more fragile than usual. For children whose seizures are under control, contact sports are just as safe or risky as they are for anyone else.
 http://www.webmd.com/epilepsy/guide/children-sports-safety?page=2

These are just a few and I want to leave you with this...... I'm very happy with the decision made and cannot wait to start a new journey as a football mom.  It may only be one season he might hate it, but I'm super excited we are trying.  


Thursday, July 23, 2015

'Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, This is the way; walk in it.' (Isaiah 30:21)

Good Morning Everyone.


    I felt the need to discuss my emotional journey over the past few years.  Growing up in a Methodist church I am very well versed in what a "Good Christian" is.  But what led me to this point in my life where I became a follower of God?  I learned that being a Good Christian and a Follower of God are two very different things.

     Prior to Braydons seizure I honestly was losing my faith.  A rocky series of events were pushing into me that there was in fact no God.  Losing my dad was a huge blow and knowing the life my father lead prior to his death made me question if he went to heaven, if there was one.  Not knowing if someone you love went to heaven is a devastating blow to anyone's faith especially one who was already spiritually weak.

     So the day Braydon had his seizure and the minutes, hours and days after I prayed every chance I got.  Now do I think Braydons seizures were punishment?  Absolutely not and I will tell you why later 😉.  From that point on my faith began to grow.  And continues to grow.  I have found my spiritual home.  Hickory Point UMC.

     We all become the people we are supposed to be as a result of our lives.  I believe God wanted me at Hickory Point and this was his plan all along.  Since starting at HPUMC I have learned that my dad is more than likely in heaven.  I've had several spiritual conversations about it and I'm comfortable with my feelings about it now.  Being a part of the youth group allows me to grow spiritually every single day.  Some of things have experienced with.this group is nothing short of a miracle.

     Braydonss epilepsy has not made me a better Christian it has turned me into the personal I was meant to be.  I am still with many.....many flaws but I know i have his love by my side.  Braydon is 100% turning out to be this amazing kid/young man.  And although his dreams of the marines, army, navy have all been knocked out I just know his plan is greater.  This week I was contacted by an old friend of Shawns who knows a few Marines.  Those Marines have taken an active interest in Braydon and his story.  They are sending several items of their marine "stash" and sending it to Braydon.  Those are his angels. I'm not sure they truly know how much that means to our family, but it means so much.  Again he may never be a Marine but this path he is being guided on is sure to make him one Hell of a person.    

Saturday, May 9, 2015

Don't be fooled by the calendar. There are only as many days in the year as you make use of.

     Hello All!!  Where has the year gone???  School is almost out, bathing suits are ready and the heat is rising!!

   Its been a while, I think back to when I started this blog.  It was a way to let out all my frustration worries and cares into writing, something I love to do.  So lets do re cap of the past few months, good and bad

     Braydon had his testing and we got the results.  He does have signs of slight temporal lobe damage but not enough to even worry about so that is awesome.  Dave Ramsey is saving money for us left and right.  My car broke down yesterday and it is a $600 fix, but hey we have it in cash.  Thank You Dave.  We are anxiously awaiting the start to camp!!  Two weeks from Sunday we drop him off.....whoop whoop.  Its so funny how much I dreaded taking him and now....now I love it.  Because he loves it.  SO why the post??  Well hang tight and I will share!!

     So when Braydon was a little boy he wanted to be a pilot, well that is obviously never going to happen.  Who wants to willingly get on a plane with an epileptic for a pilot?  SO then he decided military, man is he excited about going into the military.  Well, military enrollment is up, like way up, like discharging people left and right up.  Right now the military has the "pick of the liter" Braydon will never be the "pick of the liter" for again obvious reasons.  So a few weeks ago my husband finally tells him after a conference with one of his teachers.  She told us that in 7th grade he really needs to start focusing on the rest of his life (which I personally believe is a bunch of bull, but whatever) and he needs to know the truth. 

      That was rough few days FULL of tears and frustration from all of us.  One morning before school he came to me crying, he wanted to know why his dreams would never come true.  I got a little religious on him (we are going to church now and I feel like he really needed it) and explained our dreams and our plan are two totally different things.  God has a plan for us all and unfortunately  for you son Gods plan is not including all the things you have mentioned,  his plan is greater.  Things will fall into place you just have to trust in him. 

      He told me that morning after our conversation maybe the police force his were he should be, SWAT he said.  SO later that day I had a missed call which I didn't check the VM until way later in the evening.  It was the Montgomery County Police Department telling me that Braydon was picked to participate in their TEEN citizen police academy camp, I sent in the paperwork months ago and only 30 kids from the area would be picked.  Divine intervention?  I think so!!

     Now Braydon is planning his next few years, looking into high schools that can help further his police career, already picked a college (I agree way to early, but hey whatever keeps him motivated) and cant wait to get started on this amazing journey. 

     Everyday he is growing up more and more.  He is becoming this amazing person because of his epilepsy.  God's plan all along was to be this person, the person he is right now at this exact moment and without that epilepsy he wouldn't even be close!!  The calender is flying by and I hope everyone takes the time to be the person your supposed to be. 

   I know someone, her daughter was just diagnosed with type 1 diabetes.  Very different illnesses but very similar in the shock, pain and awe of it all.  I hope she takes the time to read my blog, not because it will help with the pain and stress but because she will know she is not alone. 

Monday, January 12, 2015

Adversity causes some men to break; others to break records.

Epilepsy
One word, One diagnosis, One eventful Life.

I'm trying to remind myself of the days after Braydon had his seizure. Seems like an eternity ago but in reality just shy of 3 years. Immediately after he had his first seizure I believed he had a brain tumor or something equally as tragic. In my immediate mind he was dying. I know that's horrible to say but as most mothers do I thought the worst.

So a few short days later we were told he had epilepsy. To this day I smile a little bit at the conversation with Dr. Quevaz. I laughed because I was relieved to know he was in fact "fine". Crazy to think that those words calmed me down but they did. The unknown is always worse than knowing what demons you have to fight.

So here I am a few years later, probably a little whiny cause my husband is out of town, bummed.   I've told myself since the get go that Braydon would be a normal kid, but he's not no matter how hard I try. Yesterday and today are a perfect example. He started feeling bad yesterday, running a fever, throwing up etc. After taking him to the Dr I should be able to let my 13 year old stay at home for at least an hour or two by himself. Do I "Need" to go to work? No, I'm positive life went on without me, but I wanted to be there even for an hour. But he cant be alone..... We are taking a trip with church this weekend and the bathing suit I ordered Claudia wont be in on time, I need to go get her one.....But he cant be alone. I wanted to pick up his prescriptions and let him rest.....But he cant be alone

Being sick increases his chance of a seizure by 50-75%. This is crazy and luckily he is a pretty healthy kid who very rarely gets sick. These are the little things that frustrate me and remind me that this could always be worse. In two weeks he will be entering into some neuropsychological testing.......and again we are entering into the "unknown demon" territory.

B never throws himself a pitty party and never complains about his problems, he in my heart and mind is pretty amazing. He never complains.....welllllll he is dying to take a bath 🛀 and can't without mom or dad in the bathroom, so he chooses not to lol!! He complains about that a lot!!! But he really has been dealt a crappy hand of cards for the past few years. And he never complains........

In two weeks we enter the unknown again and who knows maybe it will be a different outcome. Maybe this time the answers wont be what I want to hear or who knows maybe they will be exactly what I want to hear. I'm anxious and nervous and ready for our adversity to be over it now I know....to let go. Give it to God cause worry and stressing does not fight the demons. Prayer does....so I'm going to try that for a while, stay tuned I will let you all know how it goes!!!