BE LOVE.BE LIGHT. BE UNITY.

belovebelightbeunityWhen we started this journey in 2011 my  son was a kid…a small child and we lived in that time trying our best as parents to get him through a new diagnosis and yet savoring and preserving the most of his innocent childhood seizing each moment that life with Epilepsy would allow! Especially at that time uncontrolled seizures! Now fast forward five years and that boy is no longer a child he is a teen and every day morphing into a young man trying to find his way and as parents our role has changed from trying to preserve his childhood to making sure he has his foundation and he is ready for the world that is ahead of him. Recently this Summer after a series of testing my son was diagnosed with a few more things other than his Epilepsy but they were caused by how long he has lived with Epilepsy and also by the time he went  without being diagnosed ; this disorder will forever affect his brain and his ability to process things throughout his day. Since this diagnosis we have had to learn as a family how to do things differently to not only help him in the present but to prepare him for his future!

His future, most parents start preparing their teens for a future with joy and they have no hesitations and no big worries, but I can’t honestly say as a parent of a teen with Epilepsy that my thoughts may be so easy going.I’m sure if you ask others they may agree When your child has seizures not only are you worrying about a time where seizures may be increased, but you are worrying about overall health and care and those who can be a good support base for your child when you are not right there! My son has many times when he not only can find dark times of sadness, where he is  trying to find his way in the day when his  thoughts are cloudy with negativity, times when he can’t remember to do simple tasks that come so naturally to many of us! Times when important memories don’t come easily and my honest worries are will there be someone kind enough to take his hand and help him through those days he can’t walk on his own! Someone who won’t prey on his weaknesses, or laugh at his vulnerability but walk by his side seeing the amazing person he is! Taking his hand and being there his support and his light in the days that are dark, his love when he is not confident in himself?

In raising my children I have been big on teaching them to BE LOVE…to BE LIGHT to everyone that comes across their paths in this world because their job is not only to remind them that they matter but also to remember You never know what battle someone may be fighting that your encounter in that moment of the day could bring them hope! They live by the no matter what your day is Always BE LOVE , ALWAYS BE LIGHT…. So my hope is that there will be many along his journey that have the same morals and values that he has and that also they live by the BE LOVE. BE LIGHT…and no matter what your day is always BE LOVE, ALWAYS BE LIGHT mentality!

In a community we are asking for a light to shine on Epilepsy and more awareness to be raised and more understanding and now all the more I understand why! We can’t afford anymore to have so many out here feeling like they are walking a journey of being misunderstood and not cared for. It is hard enough to deal with seizures when you have family helping you but when you are walking this journey by yourself it is long and dark and no one deserves to fight alone, when you have encouragement you feel you can do anything…and on days the battle gets tough you have a team cheering you on reminding you never to give up!

I implore you Epilepsy community continue to raise your voices don’t be quieted , don’t let your lights be dimmed out raise them every day and especially this month of November  as we raise awareness BE LOVE. BE LIGHT. BE UNITY! 

We Cannot hold a torch to light another’s path without

brightening our own” ~Ben Sweetland

Coming Back…The Purpose Of The Journey

purpose-of-journeyIt’s been 7 Months since my last post… I remember a few years back in November during a family gathering I passionately told my older sister I wanted to share my family’s Epilepsy journey so that they could understand our daily life…what things were actually like for us on a daily basis! She immediately encouraged me and  recommended that I set up a a blog and that night after everyone left I went to work.  when I first started this journey of blogging, and writing about my family’s journey with Epilepsy the writing came so easy! I was able to write straight from the heart tapping in to every emotion felt from the initial testing to the actual diagnosis and the first year in and the days afterwards. As I got into social media I immediately found a community of others who had Epilepsy or cared for someone who had Epilepsy and a friendship grew and soon days were filled encouraging and uplifting each other through long days and hard times,and soon home struggles became more and blogging became less and less.

Somewhere in the community of people I had come to the idea that my writing needed to become a fairy tale of all things happy and I lost my way, my very purpose of writing the very reason of my journey! I silenced myself and kept my family’s journey just that my family’s! Only to constantly say to myself this wasn’t the purpose of all this, we haven’t gone through all this, learned all this to not share with or encourage others!

Over the years since I have actually sat and intimately written; life has taught my family and I many things we have walked a long path and just recently  over these past months since my last entry (and even over this past year) my family has been on a very real journey with Epilepsy…and I have had to sit and ask myself the same question my sister asked those years ago when I first wanted to start this blogging journey:  “What do you want from this?” “I want others to know that they are not alone (we are not alone) on this journey! I want people to understand what it’s like for a family who lives with Epilepsy!”

It’s been 7 months since my last entry and a lot has happened but one thing that has is I had to be quieted and reminded of what I came here to social media for in the first place. I wish I could say in these months that it’s been a fairy tale but it hasn’t and that’s because I had to understand that in the journey of life nothing is! There are days filled with joys and sadness, days filled with ups and downs, days where goals are met and days where we  are doing good just to be up and moving! My purpose was to share the “real journey” with you through the mother’s eyes to shed light on life with Epilepsy to make people aware and encourage other parents and caregivers that you are not alone! That you have to take each day as it comes because that is really all you can do!

So as we celebrate November Epilepsy Awareness Month, what better way to do so then to COME BACK ! Come back to where I belong with my community of advocates, with my Epilepsy bloggers…To the purpose of my journey to write life as I see it day by day and hope that it not only encourages others but it helps them feel and become part of a community!

 

We are One!

Un Pour Tous,  Tous Pour Un!  All for one, and one for all!

This motto is one that is associated with the Three Musketeers; in the novel these words are cleverly  used to describe the loyalty between three companions. Their dedication to each other and their cause! Words that explain the fact that no matter what came their way, they were together through thick and thin!

After our son’s diagnosis with Epilepsy those words were heard day and night as he battled to find a sense of himself, to understand the changes not only in his life, but also in his brain! While; we, as his parents wondered why him , and how we were going to get past obstacles! Words heard as his siblings rallied to help him through each day, putting their own needs aside! These words echoed as we lost friendships and relationships changed!  These words we cling to as air, for survival! “ALL FOR ONE, AND ONE FOR ALL!

There are 50+ million people worldwide; it does not matter if they are rich or poor, their nationality makes no difference. It does not ask whether they are a mother, a father, a brother, a sister, an aunt, an uncle, a cousin, a niece , a nephew, a grandmother, a grand father, a wife, a husband, a son , a daughter…a friend, a lover, a co-worker, an employee, or  a neighbor! These 50+ million have something in common they have been diagnosed with Epilepsy.

50+ million people who are searching for answers, trying to understand, fighting to survive, seeking acceptance, making adjustments, overcoming obstacles and living in the day they are given!

50+million people who individually have a strength that endures the hardest day, a will that could move the largest mountain and above all the mindset that they cannot lose and the determination to never give up or back down.

Yes it is important to have individual strength, to have strength and unity as a family core!

But the most powerful the most meaningful of these is the true understanding  in knowing there is; something so much more, than what we can see in front of us, than what we can hear, than what we can touch…  and that is  that we went from one voice  to 50+million who are all in unison saying  “All for one, and one for all!”  That We went from standing alone to being surrounded by 50+ million who all stand on one platform created out of the words  “all for one, and one for all!

That our touch reaches out with our determination  not to stop with in our own lives but when we as  individuals work tirelessly day in and day out to raise awareness, to advocate, to support, to love, to lift, to listen and to help others see that they are not alone in this journey!

It took three years for my family and I to learn these valuable lessons, and now we know that although there must be individual strength and family unity that the biggest power comes from 50+ million people who are willing to no longer be individuals or strangers but become family and  believe in those words “All For One, and One For All” and  stand united as an Epilepsy community with one voice and say;

We are one, our cause is one, and we must help each other if we are to succeed!  ~ Fredrick Douglass 1847

 

I Don’t Know…But I Do Know!

You’re right I can’t begin to understand what it’s like to have a seizure. I can not begin to relate to the emotions that you go through before one hits and those you experience after! You’re exactly right I have never felt the pain that comes into your head or body after a seizure has had its way.  I have never felt the disappointment of having to cancel plans because a seizure has exhausted every ounce of energy you had. You are right, you are correct, no one knows and can truly understand; unless they themselves have had or have seizures.

Do you want to know what I do know?

I know what it feels like to watch a love one have a seizure. I know the way our heart feels  one moment it’s beating at a normal pace then suddenly it turns to a quick beat and then it’s racing.

I know that, at that moment you have so many thoughts going through your mind, keeping track of time; how long have they been in this seizure?  noting what happened before, what’s going on during; gotta stay calm, Oh Lord keep them safe, what are they thinking ? don’t panic! It’s going to be alright! Is this seizure gonna change their/ our life? how long will they need to bounce back? What if this doesn’t stop? I love them so much, please let it go away, dear Lord why? Why not me? Do they know what’s going on? I feel so helpless, I can’t do anything but wait! You’re mind is pacing.

I know a stomach pain that can feel like it’s twisted in knots as I am waiting for this moment to end. I know there are times where I feel so sick  that throwing up would feel like a relief.

I know the lump that’s at the back of your throat as worry, fear, anguish, strength and calm meet.

I know the strain that comes into your eyes as you try not to blink in case you miss an important moment, knowing the importance of keeping your eye on your love one. I know the sting that can pierce your eyes as you try to keep the tears back. I know how quickly your eyes can fill with  tears like a river overflowing!

I know the tilt of your head slightly backwards as you try to keep the tears from falling, I know the turn of your head as you try to make these tears unnoticeable to the love one experiencing the seizure.

I know the shakiness in the voice and body as you try to re-gather yourself to explain to your love one what just happened, as you explain it’s ok and you are right there with them.

I  do know the sadness that comes over when plans have to be canceled, and you see the look of disappointment in your love ones eyes.

So when you say I don’t know what you go through, you’re absolutely right; No I don’t know, I don’t.

But…I can tell you what I do know and that’s if I could I would take your seizures upon myself so you wouldn’t have to. I do know that for every second you lose to a seizure, those are  minutes of heartache for me! I don’t know the emotions you feel, but I do know the whirlwind  I’ve just experienced! I don’t know your pain but I do know the aching I have when standing by unable to do anything. I know I can’t replace your daily medication, but I know I can give you a dose of laughter and smiles! I know I don’t possess the power of your rescue medications but I do know that:

“No three words have greater power than I LOVE YOU” ~ unknown source

and those are three words I’m more than happy to say!outline purple heart

Reflections!

reflection1There’s a quote that I ran across  by Mahatma Gandhi

You must be the change you wish to see in the world

Even funnier yet that after reading the quote I was approached by my older children; complaining that their younger brother was not playing nicely. I jumped at the moment to use this quote and of course I did, they both said ok we get it and took off! Shortly they were back in front of me and I asked my normal question when I know there’s something wrong; “What’s the problem?” They both chimed “we were the change and our change didn’t change him at all!”

In that moment I sent them back off to play and get along, but days and now weeks after this happened It amazes me; that their response is no different than any other child’s and to be totally honest no different than an adult’s  response! Sometimes we see change as something that happens right then and there, most of the time when we use the word it’s to reference to a change you see quickly on the spot. When we don’t see the change immediately we can sometimes give up, I know I’ve been guilty of that. So I had been trying to find a better way to explain that quote to my kids; I kept thinking what is the best way to deal with this and as I thought I remembered :

A few years ago when I was teaching dance and my group and I were getting ready for one of our performances, I wanted to use dance scarves as one of our props. I searched everywhere for the perfect ones and could not find them so I set out to make them myself. I went to Jo-ann Fabrics got the material and tools etc. The material was very sheer and delicate and the only way for me to get the design I wanted on them; was I had to use this light box and I had to have a stencil that not only had the shape but also the colors I wanted to use. From there I had to turn the light box on,stick the stencil on a center part of it and then place it somewhere it couldn’t be tampered with. This process they said could take weeks even months. The process was that slowly but surely the light in the light box was going to take the images on the stencil and slowly reflect onto my material, until the material soaked it up and the image would then be embedded in the cloth! The Lady at the store told me it would take patience, and that the reflection must be constant and consistent!

Why at a time like this I would remember such a thing. Even more why am I telling this to you? I am simply saying that sometimes like that cloth I was using, a situation is way to delicate to want instant change ;   instant change for that cloth meant it would damage the cloth and lead to it unraveling, and so that goes for our lives! Sometimes the things we want and need to see change in, are the things we need to be willing to place ourselves under a light and be the stencil for or the guidelines for. That we must be willing to be patient, constant and consistent; so that those around us can slowly soak up our pattern to the point that they slowly reflect what we are and what we want to see!

So parents if we want to see certain morals and characteristics in our children; we must not only talk to them about it but we must be willing to be the image for them to reflect!

wives, husbands if we want to see love, respect etc. in our spouses we must be willing to be the image that they can reflect!

As for me I’m not only trying to be the image as a wife, and a parent, but in my life I also have to be willing to be the image of awareness for EPILEPSY! Yes it is something I Would love to see a change over night, but I also know it is too delicate of a cause, situation to want that instant change; for fear that instant change would unravel what others have worked years to build! So I, like many other advocates have to be willing to place our lives, our struggles, our compassion, our love, our hope, our faith, determination, fight and so much more under the light to slowly but surely be reflected and embedded into the world around us!

So tomorrow as we welcome Epilepsy Awareness Month around the world; those walking the journey, those advocating don’t give up, don’t lose sight be patient, constant and consistent your image will lead to the reflection that changes the world!

Happy Epilepsy Awareness Month!

Thank YOU, my Epilepsy Community !

imageFriendship is born at the moment when one person says to another What you too, Thought I was the only one! ~ Clive Staples Lewis

This is an open -letter of thank you! That is well overdue, it has been on my heart for the longest and in my mind from the day my journey started with YOU!

Dear Wonderful and Amazing YOU,

I stood at this crossroad, like a fork in the road; on both sides of me there were people I knew coming and going, waving as they quickly passed by! A few times I reached out they touched my hand but kept going along because they had their own journey to travel! Where I once traveled the same road, for some reason in an instance my journey, the road I had to travel became different overnight.

Those that I would normally chat with about everything under the sun, our chats soon became short and very surface. Those that would quickly touch my hand as they past by, their touch soon became just a wave. And soon all these things became a blur as I stood at the crossroad! At first I was very sad, I was heartbroken because I felt alone and I was confused! Once again I was at a place where tears fell constantly, but there was an afternoon where I wiped my tears and looked around there was something new!

That something was YOU! I told you the journey I was on, I explained the obstacles I would come across, I explained to you my brokenness, I showed you my baggage. I let you observe my wear and tear, I listed my needs; I poured out my story like oil and you listened intently! You nodded and you smiled and as you turned, I thought it was to walk away…but you turned and showed me you were exactly like me, like a mirrored image of me the same! We both smiled and walked along together and soon we joined arms as we walked and talked, chatted and laughed.

Walking the journey together became very natural and we soon forgot we had just met, we soon forgot that we had previously been strangers! Those things seemed so obsolete because we felt as though we had been together our whole lives, and what started out as a common friendship soon became a bonded family! Even along the way when life tossed things at us we embraced and walked them together!

Understand that had YOU not come along my path I would not be who I am today! Thank you for showing your true image and not being ashamed of YOUR journey. I have not known you my whole life but the time I have, you have left footprints on my life that can never be erased! When my walk on this journey is done and maybe people will tell of who I am and what I’ve done in life there you will be in my story because I wouldn’t have made it with out YOU!

My Love Always,
ANGIE

This letter is to each and every one of YOU and YOU know exactly who YOU are! Thank you for walking the journey with me.
Thank you to everyone who was not ashamed of their life with Epilepsy who gladly came to walk with me and my family embracing us and loving us! We started with a small family and now realize we are surrounded by 65million and their love ones who are our family and strong community!

The heavyweight Champion… Is You!

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The opponents stand face to face, each one sizing up the other! It’s thought that one has the upper hand because of their massive strength,and the fact that the other has shown a side of meekness and vulnerability. Quietly the meek opponent has already counted himself out of the Match and feels as if he was placed in the wrong weight class! As the bell rings he walks back to his corner of the ring, wondering how he will manage it through one round!

The quiet opponent sits on his stool and is taking in the moments formulating a plan. At this moment 80 pulses of energy are racing through his brain per second, he is calm and his thoughts are clear! He rises to his feet steady and in control. As he stands in the middle of the rink his opponent comes out of nowhere, with a speed and strength that blows a shock of energy through the meek fighter’s brain of about 500 pulses per second. The fighter is left vulnerable to his opponent and is rendered helpless for a few minutes as he tries to regain control of his body. As he comes back he is dazed, foggy and is unsure of what happened and how to retaliate. The minutes pass and the meek fighter comes back and takes his stance and once again pulses are sent through his brain that any other man under any other circumstances could never handle! This pattern goes on and on for rounds, and each time the audience is gasping and wondering how a “weak fighter” was paired with such a heavy weight! Each round the pulses of energy the meek fighter is blown renders him helpless each time in a new way and each time he is down for the count longer than the time before!

As the rounds continue and the meek fighter is knocked for a loop the spectators have comments, they start becoming loud with their thoughts, they start to hurl words, and chants of his destruction, he hears mocking and laughing for his demise; little by little this meek fighter starts to believe what he hears. He begins to loose hope, lose confidence in his self! The truth of the matter is this meek fighter had no chance, no opportunity to train for this fight, he had no warning of the battle that was before him! He was going about his day minding his own business and he was thrown into the ring. He came in as the underdog in a weight class not of his own!

This is the story, this is the fight, the battle of not only my son, but of 65 million people around the world! Their opponent is Epilepsy; the punches their opponent sends takes the normal brain pulses from 80 to 500pulses of energy per second! Their fight is not one we can see both opponents but we can witness day to day the physical, mental, toll these punches can have on them physically! Their fight is one from within, and sometimes they are forced to go more rounds then they can even handle!

For my son and so many others this fight causes them to react in ways they can’t express, ways they don’t want to, it takes control for those minutes that it’s there and when it’s done it leaves them feeling like they’ve gone into overtime and them some! Sometimes the reactions they have, the side effects they have even on a good day can cause some to feel as though this person is weak; it even causes the person to feel they are weak!

Those of us who are spectators we need to understand they are handling far more than we could even imagine or comprehend, and they do it on a daily basis! They handle in a day what we couldn’t handle for a second, so weak they are (you are) far from it!

I read a quote recently that has stuck with me ever since:
“And as your days, so shall your strength be.”

It can be interpreted many ways, but what I got from it is this; whatever you have destined in your life, whatever you will come across in your day, your strength will be and is enough to get you through! Not everyone has the same path some will have it easy and I would assume their strength is not as much and they will be put in the feather weight class, you have those whose journey may be a little trying and they need a little more strength, they will be put into their class appropriately!

Then you have those that their looks are deceiving and they make the nicknames”underdog” sound like an overstatement, but one thing to keep in mind strength is not always about muscle, intimidation, etc. strength comes from a place that cannot be seen, and to a normal eye it will be missed by our expectations!

So to my son and all the other 65million out there; your strength cannot be put on a scale, it is not measured by worldly standards and what others think!your strength is measured by the days you have been given and the things you have to deal with! And each time after a blow is thrown and you get back up when the count has gotten close to 10, or you’ve seized the moment where you could! I want you to understand that in that last round when the time counts and the spectators are yelling and shouting their comments… When you’ve been knocked down by those pulses of energy Epilepsy is throwing at you and the time is in a crunch, the moment you stand up and look it in it’s eye and let it know you will not give up! You’ve thrown the most powerful blow of the fight a total knock out! Raise your hands because the “Heavy Weight Champion” is you!

Breaking Dawn

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The diagnosis had become my death… I was lifeless those months after we were told P’nut had Epilepsy! I tried day after day, night after night to process, to understand how our life; his life had changed with one simple word! It was like a zombie phase or something,  while I was struggling to live on the inside, I had to fake life on the outside! Smiling through the pain, making others laugh when I had nothing to laugh about, helping this person and that person in their spiritual growth, praying for others, worrying about others, making things come together here and there. I was pouring into others to the point that I had depleted anything that I could’ve used to revive myself!

I remember in that time people who had approached me (well intentioned I’m sure) giving advice on praying for P’nut: I was told to anoint him and pray healing scriptures over him, to have faith as little as a mustard seed, to fast and pray, to pray releasing of the enemy’s hold on his brain. To pray harder and to believe what I was praying, to do this do that! All the while people would tell P’nut God was going to heal him just be patient…trust me I was praying, I was praying what seemed like nonstop I kinda felt like I was bugging God! To make it worse with all “this advice on the right way to pray” I was second guessing my prayer life, I was second guessing my faith, and so much more! Here I was a pastor’s daughter example to all, the one in my home witnessing to the awesomeness of God and his willingness to do the impossible! I saw my husband praying constantly, worshipping and praying nonstop …both of us earnestly praying for our son’s healing and God wasn’t delivering! My faith and walk were on display for all and nothing, no response ! It left me confused and wondering and more depleted then ever!

During those days I was  constantly sitting and thinking waiting for something, waiting for anything! Then one day during the fall ( I can’t say the exact day or date, but I know it was fall because the colors of nature were vivid and the air was crisp) I was braiding Alex’s hair and a movie came on, at first it was just her and I but P’nut & Austyn joined us. At the time of watching the movie I had no idea what it was called, but it followed a family who had a daughter who was sick with Leukemia. It showed the journey from diagnosis, sickness… You saw the emotion and struggle of this household it was real! To say the least at the end of the movie not a dry eye was in that room!

That night as everyone slept I struggled, I was wrestling with God and I was determined to win! As I was wrestling a part of the movie flashed before my eyes, I broke down and cried! As I cried I apologized to God for pushing my agenda and will for my son’s life, I apologized to God for not once asking him over those months what was his will and purpose for all this? As I did this I surrendered everything!

Have you ever cried so hard that you have been drained mentally and physically? If you have you know what I’m talking about, and you’ll know all the more that this was that kind of night! I remember pleading with God to help me and to help my family. After that I fell asleep!

the darkness, the death was being removed…

The part of the movie that flashed before me was the fact that everyone was so busy trying to give this girl life, that they didn’t let her live what life she had! They were so busy trying to give her something that they really didn’t have control of, that they took away what control they did have! They were so busy trying to create what they couldn’t that they killed what they had!

That morning a light shone through my bedroom window it was bright and comforting!
As I looked out the window I saw the rays of the sun BREAKING through the darkness. It was DAWN!

I hadn’t seen the sun rise in such an amazing way it was breathtaking and as the Sun gradually made it’s way into the peak of the sky…I heard something come from the kids room I hadn’t heard in a long time, laughter and more laughter! As we went to see what was going on the kids were playing, talking and laughing and who was in the center of all this? P’nut…his eyes hadn’t looked so bright and as their Dad and I stood at the door he smiled and they all smiled and said good morning!

At that moment I took in the deepest breath and released it, I was alive! When they asked what we were going to do that day, I responded with “we are going to seize the moment…and live!”
(Which is when and why our family started using that phrase in all we do.)

You see I know and speak first hand of what change, unexpected change can do to you, I know firsthand how a diagnosis can impact your life even your inner being so hard! I have personally experienced the pain not knowing and not having control can cause! I know personally the anguish a parent can have with knowing they can not help their child the way they want!

I also know what comes after you accept the change! I know the impact the diagnosis left will become your limp the evidence that God was there! I know after the pain you receive the best blessing! After the anguish comes the peace that there is someone so much greater than yourself and he has it all under control!

I am a living testimony…
“that weeping may endure for the night, but joy comes in the morning light” Psalm 30:5

And after all is said and done you too shall breathe deep and live!

***After that day P’nut went 2 months without any seizures, but even after they started again we lived! The movie I referenced was My Sister’s Keeper**

Death After Diagnosis

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Honestly I don’t know why I am doing this blog, I don’t know when the idea popped into my head that this is what I was going to do. Maybe I am doing this as a place just for me to be real, and maybe I am doing this as a place other Mothers, parents, or whoever can come and read and say wow I felt that way too, I’m not alone it’s ok that I felt/feel that way. In the end maybe this blog will serve the purpose of both! I’m not going to go into detail about my son, I write a journal of his daily life and those of you interested in reading it can visit and walk daily with him at http://www.caringbridge.org/visit/andrefloydjr This is about life, the journey of our life through my eyes. The way I perceive it and feel about it with no holds bar! To start you have to journey back with me to May of 2011:

I remember taking my son (who loves to be called P’nut, from here on out in all my posts that is what I will use) to the hospital for monitoring…I remember that I do. That day he was hooked up to so many things, so many, but their was one that got me the most! I remember it because a special tech had to come in for it. She measured his head study it and made markings on it, and she started putting glue here and there and began intricately putting wires on his head,making sure they went exactly where needed…once done she took out this gauze and began wrapping his head to keep the wires in place!

Over those next hours I can remember people in and out of his room, test here, test there.
A test that he had to breathe quickly, a test with flashing lights, there were so many I can’t remember them all. I do know I was feeling so much, I didn’t know what to do,I refused to leave the room, to leave his side… No bathroom, no showering, no going to get food, no sleeping. I was afraid to do anything but sit there because I didn’t know what to expect, and the fact that the staff weren’t telling me was causing me every emotion possible.

A few days later I was called into the hallway… I remember the hallway the doctor put this film up on the board and started showing me a brain explaining about the details etc. I do remember he then pulled out another film this one was P’nut’s … His brain nothing like the first, nothing like it, I took in his words as he pointed and explained…I have never gulped so much in my life, I honestly felt as if it was a mistake! My son with those beautiful eyes and happiest smile, there was nothing wrong. As the doctor talked, I turned and looked in my son’s room and our eyes locked…I heard my name called…

I turned back around and the doctor then looked at me and said Mrs. Floyd, Andre’ Jr. Has Epilepsy! I could feel a crush in my chest my heart was racing so fast! I know most of the time people say excuse me and ask the person to repeat themselves, I didn’t need it repeated I heard him loud and clear and those words were resounding through my whole being. I couldn’t handle it I tried, I did try but I broke down and cried! My thoughts were fast and scattered, I had to call my husband, but how was I going to tell him this? You know honestly I thought to myself what and how is he going to react? I don’t need to tell him, but I made the dreaded call. I heard his voice and I broke down explained to him what was going on and he was headed to the hospital. I sat back in the room with P’nut…I looked at my baby and life passed through my mind, from the moment I found out I was pregnant, to me holding him to just life with him period! He was my precious gift and where were we suppose to go from here? I looked over at him, he smiled but in his face and smile I could tell he knew and he didn’t look the same! At that moment the sadness crushed me, I was holding onto life!

Soon my husband was there with our other kids. He came into the door and went straight to our son embraced him and came to me and hugged me…I remember him saying “Thank you for being so strong and taking care of him, we’re going to be ok!” After this it is blurry, a day later he was discharged. We brought him home! I was glad he was home in the comfort of his own room, but at the same time I was afraid I couldn’t take care of him! I didn’t know this, this wasn’t a part of life for me…I was fearful about giving him meds, I was anxious about him having seizures.

Over those next days P’nut’s seizures still came, he was tired alot, he was trying to adjust to his meds, he was adjusting to his limitations,and trying to understand why after days in the hospital he comes home to not be normal as he knew it but uncharted very limited territory. In those days I was adjusting, trying to understand, trying to educate myself and trying to incorporate this newness into our lives. Somewhere in there I , I didn’t know what life was anymore.

I do remember a night where I just cried and cried, and the feeling of being so alone and empty, and feeling useless to my son, useless to my husband and useless to our kids. I couldn’t protect my son from this and it hurt I had nowhere to run.Not long before we were living, laughing, smiling and carefree! But you know there was something that happened in that hallway, those words, they slowly did something… a diagnosis it takes your life away, it changes your life and before I knew it that diagnosis wasn’t just a diagnosis it had become my death…..