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!”

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….

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!

The Gift

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“Remember, the greatest gift is not found in a store nor under a tree, but in the heart…” ~Unknown

This year when asked by my family what I wanted for Christmas, I constantly told them I didn’t want anything! When they continued to ask the question I later responded with:

  1. Quiet time to write
  2. Help doing chores
  3. Get along with each other
  4. To follow directions the first time given
  5. Try their best in all they do

Their response was “We can’t put those things under a tree” as I smiled and said “I know!”

As we later had a more detailed conversation about my requests; I reminded them sometimes the smallest things, the ones we forget or we take for granted are the greatest gifts we could ever give or receive! Those gifts are the ones that truly require the most from us, a part of us! Those gifts require us to stop and think and do from our hearts!

In explaining this to them they chimed  “It’s like getting gifts everyday” and truly it is!

After our discussion and my time of reflection, I remembered  that in our day-to-day there are also things that happen to us or come our way, things that are given; that cannot be wrapped up and put under a tree, those that may hold value and many more that will be priceless!

The next day I notified my family of a challenge for the upcoming year, and this challenge I place before you also!

THE GIFT CHALLENGE:

Take a left over medium size box (make sure it is a deep box) from your Christmas/holiday celebration, or any you may have around the house. Wrap it with any left over wrapping paper.

Once you’ve wrapped the box cut a slit big enough to place a slip of paper in. It only needs to be big enough to place the paper in. (not to take the paper out).

(After the box has been wrapped and the slit has been made.)

Place a tag on it that says  “THE GIFT”

Then take the box and place it in an easy accessible area.

For the next 359 (give or take) days you are to write down on a piece of paper the things that have been gifted to you, things that have changed your life, changed your day, made you smile, laugh, touched you in any special way etc. (make sure you date each piece and if you want put your initials on it).

on Christmas Eve place “The Gift” under the tree to be opened Christmas Day. It is then that you will truly know:

“That Each day comes bearing its own gifts. (All you have to do is) Untie the ribbons.” ~ Ruth Ann Schabacker

All information in this blog is copyright to the original author The Elite Mom©2013

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!

Strength Not of My Own!

” Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.”  ~ unknown

In 2006 after years of trying to figure out symptoms and complications that I had been dealing with since in my teens; a doctor was able to pinpoint the problem and I was diagnosed with Wolff- Parkinson- White a heart condition in which the electrical system of the heart is abnormal causing rapid heart rates. With the finding of this and a couple faulty valves my cardiologist wanted me to have surgery. I was to stop some of my current activities till I was able to control my condition a little better; one of them being teaching dance at that time, and the other caring full time for my 2 children. I told my doctor giving those things up was not an option, and I would learn to control these things with diet and increase exercise regime!

After great discipline I was able to control my condition and episodes a lot better, and they soon only came during high stress times.

A couple of years down the line I once again fell ill, dealing with symptoms I had dealt with as a teen/ early adult that no one could diagnosis! I had just had my youngest son and was dealing with intense symptoms and I was seeing my doctor they started running test to see if I had M.S.  and was shortly able to rule that out, but the question still remained what was going on? Shortly after I was diagnosed with Lupus, thrown back into learning how to maintain a proper diet, find the right exercise regime etc.

I struggled to find the right balance and be the healthy person my family needed! I found a rhythm to keeping myself healthy! Another obstacle passed!

Not even a year after my diagnosis we were hit with another obstacle this time my oldest son, he was diagnosed with Epilepsy and I would have to learn to care for him! Even on days where I wasn’t a 100%  I  would have to struggle to fight the pain… to do the things I normally in “sick days” couldn’t do for myself let alone others!

Just this Summer I learned after a hearing checkup that I was losing my hearing and would soon need to be fitted for hearing aids, yet another obstacle to overcome!

When people learn of my story they always worry and ask how do you do it? I can understand if you just went insane, or if you decided to give up! What they don’t know and  never understand is that  On my weakest days, that is when I’m my strongest;  there is  a strength that is beyond my understanding fueling me, pushing me, giving me a power far beyond my natural capabilities! God has taken me in his arms he walks me through the toughest days, the weakest days! On the days I and others may understand if I give up God holds me tighter and blesses me with a strength that is of his own, all He ask in return is that I never give up, that I trust him to hold me and carry me through,  Making me a true testimony of the ‘Footprints in the Sand!”

One night a man had a dream.

He dreamed he was walk­ing along the beach with the Lord.

Across the sky flashed scenes from his life.

For each scene, he noticed two sets of foot­prints in the sand:

One belong­ing to him, and the other to the Lord.

When the last scene of his life flashed before him,

he looked back at the foot­prints in the sand.

He noticed that many times along the path of his life

there was only one set of footprints

He also noticed that it hap­pened at the very low­est and sad­dest times in his life.

This really both­ered him, and he ques­tioned the Lord about it.

“Lord, you said that once I decided to fol­low you

you’d walk with me all the way.

But I have noticed that dur­ing the most trou­ble­some times in my life

there is only one set of footprints.

I don’t under­stand why when I needed you the most you would leave me.”

The Lord replied, “My pre­cious, pre­cious child,

I love you and I would never leave you.

Dur­ing your times of trial and suffering,

when you saw only one set of foot­prints in the sand,

it was then that I car­ried you.”

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*Thank you to my brother who shared this quote and touched my 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!