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!

 

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!

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

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….

Someone Like You, Cared!

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” ~ Dr. Seuss

Two and a half years ago when my son started his journey of testing to see what was going on he started out with one neurologist. After his diagnosis with Epilepsy; this neurologist received his chart with all the information. During the first week home as we began adjusting this neurologist called to chat with me and to see how things were going; as we chatted it was explained that my son’s condition was more complicated than they were comfortable dealing with, that this would be better if dealt with from the best!

Many shook their head at this knowledge but I respected this doctor, and thanked them for caring enough to admit this and see that we were placed in the right doctor’s hands to get the care needed. That first appointment with the new neurologist we all were nervous we didn’t know what to expect; we knew he was known to be the best at what he did and well-respected!

As soon as the doctor walked in we knew him, he was the same attending doctor who had diagnosed our son with Epilepsy, the same one who came and walked me through his tests, let me cry and explained to me plainly so I could understand. He was the same doctor who then after went into the room sat down with P’nut and explained what was going on so that he could understand… and then sat there as we took it in! This doctor when I asked him “Where do we go from here?” Looked me straight in the eyes and said this young man deserves to go to the top! You go home you learn everything you can about Epilepsy, you learn to care properly for him, you continue to journal so we can work hand in hand to give him the best care.” and as I shook my head he went on to say ” You help Andre’ Jr. become exceptional in the life he’s been given!” I took those words not only pondered them in my heart and mind, but grabbed hold of them and let them empower me to be the best for my son and not just that it became our goal and focus in life.

Through these past years this neurologist has worked wholeheartedly to be the best doctor for my son, he has not only taken the time to listen and chat with him but all of us! whenever he saw him he would embrace him with a hug and remind him of his strength! This doctor touched P’nut’s life so much and inspired him, to the point where P’nut started a project to give back to others who have Epilepsy. In this project his doctor encouraged him and adored him for all he was doing. Speaking to others of the work “his young patient” was doing!

Sadly today after P’nut’s check up we learned that his doctor was leaving to work on a big project that he had been asked to head up; as we left out we felt the heavy hearts of not only losing an excellent doctor , someone we trusted our son’s life to, but we’ve lost an encourager, a listener and a person who empowered us to be, not only individually but as a family the best we could be “in this life”!

Like the quote above said  when you are dealing with a condition, disease, illness; whatever it may be that you must be under constant care/supervision of a doctor unless that doctor cares a whole awful lot, and truly cares no amount of medicine, visits nothing is going to make it better, It just isn’t! If you so happen to be blessed with a doctor who cares completely it makes a difference there may not be a cure for what you are going through, but their genuineness is medicine for the soul! The walk can become a little easier knowing that your doctor is with you all the way, fighting alongside you!

Dr. L (as we called him) may not have been able to cure our son but he placed us on a path to healing mentally and spiritually and as a family! He empowered us and encouraged us not to let Epilepsy stop us but use it as a stepping ground to take our son right to the top! Because Dr. L. Cared an awful lot; life got better, our way of living became better!

As we departed his office his last words to P’nut “a couple of years from now you will be bigger and  I’m expecting great things from you!”

Dr. L thank you for walking this journey with us, and taking care of our P’nut. We will truly miss you! We know you are going to help make great strides and “We’re expecting great things from you!”

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!

Lose Not…

There are days when I feel like I’m on top of the world, unconquerable; that this journey of life, the journey of Epilepsy cannot get us (my family) down! Then there are days…days like lately where sighing becomes like breathing, and the joy of days before seem like a million years away! Days where I feel not only as a mom but a caregiver that; all the steps taken , progress made, hopes built, appear to be vulnerable to collapsing! Those are times when “sighing” just doesn’t seem like enough and my mind feels as if everything is at a complete loss! When we tried everything and at that one moment we feel so unsuccessful in our efforts…

         Lose not courage, lose not faith go forward ~Marcus Garvey

In reality there are going to be hard days, days where we are so tired, days where giving up, or saying we can’t do it come so naturally…but…

Lose not courage… don’t be unsuccessful in keeping possession of your ability to do the things you know are difficult or dangerous.

Lose not faith… don’t be deprived of your confident belief in the truth or value. don’t lose possession of your strength, or your unshakeable belief in things; don’t be deprived of your confidence or trust.

Go forward…resume what you were doing and advance to what is ahead!

We have been given a promise:

No test or temptation that comes your way is beyond the course of what others have had to face. All you need to remember is that God will never let you down; he’ll never let you be pushed past your limit; he’ll always be there to help you come through it.” ~1Corinthians 10:13 MSG

In the words of many today “If God brought you to it, he’ll bring you through it!”

Our job is to “Lose not courage, lose not faith, go forward!”

A Time to Dance!

girl and rainI remember growing up, hearing a song by the Beatles called “Turn, Turn,Turn” I loved it! I always thought that no matter how bad things got eventually they would get better, that’s what the song said! As I got older I remember hearing a scripture reading of Ecclesiastes 3 in church; this chapter said everything the song did and it floored me (of course it was explained to me the song was based on this scripture.) There was one verse that would stay in my mind  and that was “A time to mourn and a time to dance!”

As huge times of sadness entered my life from death of loved ones, major life problems etc. this verse became ingrained in my heart. I knew God’s promise of no matter how much I cried, grieved etc. I would get to a point in life where I would be able to dance with joy! I began to live in this promise, to hold onto it! This verse to me said that there would be a time to mourn and then that time would be done; and when it was, a time to dance would take its place!

Now for the past couple of years since my son’s Epilepsy diagnosis; people have prayed for him asking for complete healing of this condition, prayers so strong they made you feel chill bumps! I came to see this time as our “mourning” waiting for the healing which would bring a time of “dancing”.

The other day a quote came my way:

Life is not about waiting for the storm to pass, it is about learning to dance in the rain! – Vivian Greene

It was at that moment the old dance teacher in me was revived and I  had to say to myself wow what perspective! Dance is an art form, it is in this that the human movement is seen as the medium! This human movement is used as the  medium to convey  senses, understanding, and communicating of ideas, feelings, and experiences. It is believed that dancing helps develop communication abilities, problem solving and critical thinking skills.

So when I saw this quote and thought about my son’s Epilepsy; which the doctors referred to as “electrical storms”… I realized sometimes in life there will be storms that we won’t be able to stop and those that  may never cease! In that case it’s not about waiting for them to pass but it’s learning a new form and way of understanding, a new way of communicating your ideas, feelings and experiences. It is in this new form that we will develop the ability to communicate in the storm, a new way to problem solve in the storm  and we will see our critical thinking skills change to guide us in the midst of the storms…that is where we will begin to dance!

What I realize is that I would love for there to be a time of “mourning” that ends and the beginning of the time of “dancing”, but what I also now know is that; no, life isn’t about waiting for the storm to pass; Life is indeed about learning to do things differently! To free yourself from what was and freely move in excitement and expectation  to what will be!

We may be surprised because sometimes the storm seems so bad from inside the house but when we step out we learn the rain was the lightest most refreshing thing that touched us! After all, there first must be a storm to receive the rainbow.

So maybe we all need to learn to no longer wait for the storms to pass, but learn to move through them, to dance, be free and to live!