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!

 

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!

Times are Changing

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From day one my kids have all been those that had to stick to a schedule, one day off a complete chaos for weeks until they calmly slipped back into their schedule! My husband and I had plans for our children, hopes and dreams strategically made for each one of them! Our set house life an the way we went about things was to raise our kids to be the best at everything and to achieve these goals we had for them! For this very fact and reason I became a creature of habit ( in my earlier years I just went with the flow.). In this habit I started to go about things in a mundane way!
This was our life and at that time from the parental point of view my husband and I thought it was good! Those years when P’nut first started to show signs something was going on with him it threw our lives for a loop and things began to go off balance a little but we made it through that time somewhat!

Shortly after P’nut’s diagnosis and things had started to calm down, my husband and I decided it was time to get the house back in order, we felt it was best!

You see we tried to place our home back under that routine, back under the hopes and dream we had created! One day during classes P’nut broke into tears… He couldn’t remember what he had been taught, he felt incapable of fulfilling the path we had put him on, and he wanted to give up! He was mad at himself for letting his Dad and I down and spent his whole afternoon in tears!

That night as I sat going over the day I knew tomorrow couldn’t be the same for anyone but especially P’nut. I knew the schedule, routine, hopes and dreams we had spent 8yrs. Building and perfecting were going to have to be tossed out and we were going to have to start from scratch. I also knew even then that it may take a few tries to find the right fit for us!

I started asking myself these questions:

1. What was the problem/challenge?

2. What was the need?

3. What were possible solutions?

4. What was the focus?

5. What could be the initiative?

6. What was the goal?

7. What would be the impact?

As I set and pondered these questions….I was getting ready to learn the biggest lesson of my life!
Something was about to be formed, something was being made from the broken pieces and that was…
E.L.I.T.E.