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!

 

“Awareness Empowers”

This post is part of the Epilepsy Blog Relay which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

There is something about the moment you hear the words that you are pregnant you can’t wait to see what that baby will look  like! As the months go by and that baby starts to grow and kick the anticipation mounts and your mind is overwhelmed with thoughts of holding your baby in your arms, and touching them and kissing them! When “Labor day ” finally arrives and the nurse brings your baby to you, you inspect your baby; first their hands then their feet looking them over counting making sure every part is in tact! Going over their face taking in their beauty! Looking in amazement this very creature “Wow” in fact this little human came from you! They are beautiful! Every piece of their anatomy accounted for and the doctors confirm they are PERFECT!  In reality we never once stop to think after taking into assessment their outside that there may be a slight chance there is something wrong with their brain…I know I didn’t with my son, he was perfect on the outside why in the world would something be wrong in the inside?

I didn’t think this because there was so many things that I was not Aware of  on many levels from my own naivety!

In May it will be 5 years since our son was diagnosed with Epilepsy and as a Mom who cares for someone with Epilepsy when asked my advice to family,friends, support outlets to those living with Epilepsy. Find and read everything you can about Epilepsy, talk to the one who live with Epilepsy and what their journey is like! Find out everything you can from them and their family about their medical history that can be released to you! Having awareness of Epilepsy and how it affects your love one not only empowers you but empowers them in their journey to know they are not alone! It also helps you become a better advocate!

 

Next up: Be sure to check out Next Site  Cathy Hozack   http://livingwellwithepilepsy.com

 

Support For the Journey!

This post is part of the Epilepsy Blog Relay  which will run from November 1 through November 30 follow along and add comments to posts that inspire you!

A few years ago, I made a decision with the support of my family that I was going to start a blog where I was going to share from my view as a mother and caregiver my family’s journey with Epilepsy through my eyes, in my own words…holding nothing back!

I took a hiatus from writing  so when I was asked to be apart of this blog relay it brought some apprehension, how do you go back to something you quietly walked away from?

Since coming back home from a doctor appointment today, I have tried hard to find the “right words to say!” I put the opening header needed and the closer that was needed and I walked away going over in my head what was written  and all I could see was the words Epilepsy Awareness…what is awareness?  raising people’s knowledge,  their perception of a situation or a fact in this particular situation it has to do with Epilepsy.

How can I do that? I took a hiatus because for so long I just couldn’t find the words to say… to describe life for my family… to talk about my son’s journey! Have you ever lived through a time in life where it just had to be lived  out at that present time and then later you could reflect upon it well sometimes life with Epilepsy  is just that . It is more than words can describe it is a journey that has to be lived daily and to its fullest and as it comes!

Helping the world know that this journey with Epilepsy isn’t always easy that this journey doesn’t always have words to describe it!

Recently I had  a discussion with my son who said ” Mom no one knows life has been different for me since I was diagnosed with Epilepsy”  In which I returned ” That is very true, we will never know how it has felt for you, but one thing I do know is that WE have been with you every step of the way and the moment life changed FOR YOU, LIFE CHANGED FOR US!” he looked at me and said ” But no one knows how it feels to have a seizure, how it feels to not be able to do something, how it feels to be stuck in a doctors office all day; how you have to take all the medications, how you have to remember all these questions they ask. How you have to be strong even when you don’t feel like it and all these other things, and how people are always asking you are you okay!”  I sat and nodded and said “Okay and looked and said “hmm, that’s a lot for you to deal with!”  I then went on to respond ” Very true we do not know how it feels to have a seizure, but we know how it feels to watch you have a one and be helpless! We do know how it feels to not be able to able to do something, but we know the feeling because of choice…and we never regret any of them! Yes all of us know the feeling of being stuck at every single doctor appointment, monitoring event and so much more because you have never been alone. No we don’t take all the medications you do but we do go and pick them up. Yes we all know how it feels to remember the questions the that are asked because we all know your medical history and are there to help in case of emergency. We may not have to be strong in your particular situation but we have to continually remind and encourage you to be! Now when it comes to people asking us if we are okay no we don’t know that question because they usually forget to ask that one because they are more worried about if you are okay than if we are!” At this he looked wide eyed at me!

After that conversation with my son I recall many conversations with my very dear friend who just recently passed of cancer who always said of my other children ” I’m worried that so many will focus on P’nut in his journey that they will forget his sibling’s journey with him in this life!”

Sometimes it is easy to forget that people are walking your journey with you! Just like my son did, we may not always be seen on the front line but we stand closely by!  We are the parents, the caregivers,the husbands, the wives,  the brothers, the sisters, the family members, the friends that come to be the support that is needed day in and day out! We are those that care daily for those who live with Epilepsy that without us the journey may not be so bearable but along the way we are often forgotten.

Yes there is 50 million people worldwide who have Epilepsy and more who are diagnosed daily but these people also have family, siblings and friends who come alongside them to be a different kind of warrior in this Epilepsy journey that they cannot be forgotten, because they are the ones that when the person starts to feel weak and wants to give up whispers to them keep trying or don’t give up! They are the ones that walk behind the person with Epilepsy and cheer them on and becomes a warrior of a different kind! We cannot forget the parents as we raise awareness that give their all to the children out here who advocate beside the millions who live Epilepsy who dedicate their lives and voices to this wonderful cause!

Next up: Be sure to check out Katie Jameson Miss Utah Pre-Teen for more on Epilepsy Awareness!

I Was Here!

I came across a song and it made me think and also reminded me that…

As a girl I had dreams of doing something big, having a life where everyone knew who I was…over the years my dreams shifted, my priorities changed…

Over this week I’ve been able to do some reflecting and take a look at my life! On this very day my birthday; I ask myself at the end of my life what legacy do I leave behind? Have and will I fulfill the very purpose I was born for?

Even though I dreamt of one as a younger girl, I have not been given a big platform in the entertainment world, I don’t have a life where everyone knows who I am, I don’t sit at a place where I come into contact with millions of people to make an impact…but this does not mean that I can’t make a mark on this world!

What I do understand that in life we all have been given platforms, their size depends on what we choose to do with them, the magnitude is felt by how we use them! What I do know and what I now see is that the legacy I leave, the proof that I was here is done by the way I choose to live and the impact I have with those around me!

To my parents I want to be the best daughter that I can be that it not only touches them but inspires my children to have a remarkable relationship with my husband and myself. To my husband I want to be that wife that brings glory to her husband, and imitates the love that Christ has shown us impacting him and bringing joy to his life; in doing influencing my children and in turn hoping it impacts the way my children interact in future relationships with their spouses! I want to be that mother to my kids that brings joy and delight to their hearts, that reflects the love that God has for us his children…praying that my love so impacts my children and moves them to be not only the reflection of God but also me in their children. That the traditions I have started with them have influenced them that they carry them into their lives and remember and are surrounded with my love! To my siblings I wish to be the sister that is not only bonded by blood but by friendship and love, that I may be an example to my children and those around me.

To my friends I want to be a friend that is so close it feels as though I’m a sister, to be a champion in your cause fighting alongside you…

To everyone I want to be the smile on the unsure days, the laughter on the hard, the kind word when the journey gets rough, the listening ear when you need one, the smallest act of caring when you are all used up.

I want my life to be the reflection of Flavia Weedn’s words in which she said:

“Some people come into our lives and quickly go. Some stay for awhile,and leave footprints on our hearts and we are never, ever the same!”

The impact I make on my family and friends and those I come into contact with is my purpose and will leave footprints on their hearts, those footprints will be my legacy that will surely show that “I WAS HERE!”

Another Single Moment

On this very date three years ago what we didn’t know was that; that one moment that we witnessed…was actually a seizure, and more than that; what we didn’t realize was that one single moment was getting ready to change our lives forever!

….to be continued…

Had it not been three months later I would’ve thought we were stuck in time reliving the same single moment over and over again; a sick joke being played but it wasn’t! It wasn’t January 19,2011 but the date was April 18,2011…excitement and celebration was in the air once again and the kids and I had just come from grocery shopping. As I was making breakfast they had went to the lower level of the house and began singing and running around the pool table. As they sat down to eat my oldest son screamed and the sound was filled with pain and it stung the air. As I turned to see what was going on his eyes were locked and rolling his head twitching all these movements were concentrated to the left of his body! After a few minutes it stopped but as he try to explain what was going on his speech was so slurred and I couldn’t comprehend what he said; eventually he began trying to eat but he didn’t know how everything fell from his mouth and the same thing happened as before!

As I dialed his pediatrician’s office she quickly advised me to get him to the emergency department! As we got him in the car and settled he got sick on the way and he was scared. Once at the hospital he was checked in and the testing began and it was hours and I remember the anxiety I felt was so high as I paced waiting. Each time I was asked to leave the room for test after test; the feeling of being helpless, not knowing enhanced my anxiety!

Finally a technician came in to run the EEG and when he was done he called me back in the room… he told me he wasn’t suppose to say but he saw both slow and fast brainwaves on the results, he went on to tell me to journal every single thing because that would in the end what would help diagnose what was causing these episodes! He also reminded me to know that God was with my family every step of the way!

After all the tests and their results were looked over a doctor came in and announced that my son had a seizure and that he wanted him to see a neurologist as soon as possible!

A seizure, a seizure I hadn’t heard that word since his first febrile seizure at 1 1/2 and I was not and didn’t want to hear it now, but it was said! What caused it they had no clue and their advice to follow-up with the neurologist they referred.

Another day of celebration turned into a day of not knowing what the future held for our son, for our family…but yet and still on that day a journey to find answers began!

That moment, that we witnessed three months before; that moment we witnessed just hours earlier …was actually a seizure, and more than that; what we didn’t realize was that one single moment was going to lead to another single moment and this time it wasn’t a question of if it was going to change our lives; because at the moment the word seizure was spoken. That single moment hours ago well it had changed our lives forever!

In a Single Moment!

work pics 921Eyes focused and locked to the left, head slightly jerking. “Mommy? Daddy? Where are you? MOMMY, I CAN’T SEE! As he continued to speak his speech slurred, and his words unrecognizable. My heart stopped, I panicked but calmly said “I’m right here, can you hear me?” “Mommy, Mommy, I can hear you, but I can’t see you! My son said as he began to wave his hands in the air, searching for us to be able to touch and know we were there.   My husbands face said it all , and although in most situations he is calm, I could tell this time was different he was as scared as I was! He quickly picked our son up and ran to the car. In my mind, I couldn’t think, but I wondered is my son having a stroke. In the car on the ride to the hospital up the street, I spoke calmly to my son while holding him…

Just minutes before we were at Chuck E Cheese celebrating his birthday, shooting basketballs into the hoop, collecting tickets, eating pizza, and posing for pictures! Just minutes before we were laughing and smiling! Just minutes before we were all okay!

Now we were rushing our son into the hospital straight into the emergency department. I stood in fear as I explained what brought us in, and then a tug on my jacket…”Mommy, I don’t feel so good; I feel like I’m gonna throw up” and he did.

My husband was finally in after parking the car. Minutes later we’re in the room waiting for the doctor to come in.

In my mind I’m replaying the day, trying to figure out what happened, what was going on! Hours before we were in that exact hospital, just a few floors up; in the office  at his yearly examine with his primary doctor. He was a healthy 8yr. old boy “Healthy”, his doctor had checked him thoroughly, he had been growing perfectly! A few hours before he was FINE… now here we were, with no clue, no clue what was going on!

Nurses, doctors, technicians in and out of the room, tests being ran, blood being drawn. Sitting there confused, scared…pleading with God! Finally after what seemed like a lifetime, the doctor comes in after speaking with P’nut’s primary doctor “He has a concussion, these are his instructions for discharge…”the night before P’nut and his younger brother had been playing in the living room on the wood floor, they had sleeping bags down and in one swoop, P’nut had hit the ground his brother fell on top of his head, causing it to bang onto the ground; for a moment it caused him to cry but he got back up and played. When I called his doctor office they said since he was moving around all was fine, and he would be checked out first thing during his appointment.

On this very date three years ago  what we didn’t know was that; that one moment that we witnessed…was actually a seizure, and more than that; what we didn’t realize was that one single moment was getting ready to change our lives forever!

….TO BE CONTINUED….

Call of Duty!

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Call of Duty is a very popular video game in the entertainment world, and most likely if you are a gamer you play, or have tried to play the game! If you haven’t done either of these, I’m sure you’ve heard of it, or know someone who plays it!

This game is filled with missions and  series of objectives. If you play online you can play with others from around the world separated into teams with a specific mission to complete! When playing online this game calls for timing, precision, skill, teamwork , maneuvering, anticipation of your enemy’s movement And much more.

I live with an avid C.O.D. (At this moment it’s C.O.D. Ghosts) player and many times the games go from fantasy to real life (L.O.L.) and if I was asked to sum up the game with one word it would be “Intense” and just from hearing the noise from outside the door it can go from fun to highly emotional with one movement of the controller! There have been many times where the reminder has not only been this is not real life, but just a game! We have also joked of the fact that when my husband is going to play, he’s off to war, and those times he’s not playing, that he’s home on leave! Yes it’s that serious!

All jokes aside; as I thought about his game after texting him to quiet down, I realized we have all been given a “Call of Duty” in life whether we understand it or not! In our life here on earth we have been given a purpose. In our purpose (the reason we are here) we will be given many missions, filled with a series of objectives that we must complete!

Then there are times like on the online version of the game, that there is one special specific mission that must be completed! The mission that not only calls us to have precision, skill, teamwork, anticipation, but one that requires patience, and the wherewithal to endure!

You see the games can be played in the first person; where the player experiences the action through the eyes of the protagonist. Or you play the third person where it’s an outside view, over the shoulder, behind the back. This third person view allows you to see the surrounding environment better and act accordingly. It allows you to see the mission through total different eyes!

For my husband and I we have been given a “Call of Duty” with a specific mission to take care of a child who has Epilepsy! Just like when you first start playing the video game, you have to learn it and the more you do, the better you get at it. So it’s the same for taking care of our son we had to learn how. We had to also come to grips with the fact that in this mission we are not first person but third! Our job to stay by our son’s side at all times watching his environment, helping him to see the things he couldn’t from his view and acting accordingly. It may get very intense at times, and it may seem as though Epilepsy is getting all the points but  the objective is to work as a team to endure this condition and one day not only with our son, but 65 million others we will  be able to say we “Won the round” !

*If you have been given a specific mission whether in first person or third; don’t give up remember you have been given all the tools you need for your “Call of Duty” you just need to learn how to use them!

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!

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…..