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!