Let the Games Begin

you never know what to expect out of life. So when life hands you something that seems to be uncontrollable create your game plan. 

What is a game you like to play as an adult or as a child? Right now I love to play dominoes. I can play for hours and hours on my cell phone. When I play this game I feel like I am in control even though I do not control the dominoes dealt to me by the computer. 

When life is giving you something that you cannot control you have to look at it like your favorite game and then figure out the best way to play it. 

Maybe you don't play games may be you don't play video games maybe you don't play board games maybe you don't play cell phone games but maybe you like to gamble or watch television game shows or maybe you watch sports games whatever it is figure out how to plan out your life how you would plan how to play that game.

In Domino's I know the first person to get to 150 points wins the game on the cell phone. So I know every 50 points will get you there and I know how to get there by Multiples of five creating certain plays for myself and shutting down certain plays against the opponent and for me it is the same way in life. I create a dAily plan to get to meet my ultimate goal on Fridays. 

Even though my daughter and I or disABLED we have the same opportunities as everybody else and as long as we create a game plan to be successful we are able to win the game. We just make adjustments and sometimes we have to go into overtime. 

But You can Not wake up every day expecting things to take place if you do not put forth a plan of action. 

Don't expect to win the game if you are not prepared to play. waking up every day simply trying to live will have you losing the game every single day. Create a game plan so that you can beat down the opponents through the game of life and win the game. 

 

Lemonade

When life gives you sour lemons make sweet lemonade. What does that mean when you are born with something out of your control? 

Yes I am disABLED but what that means is that I am very much able to do anything anybody else is able to do I just have to learn how to do it with adjustments. 

Life is not really designed to be sweet lemonade. There are so many different ways in preparing lemonade to make it taste perfect that you have to understand life is actually the same way. 

The main ingredient of lemonade is the water and the lemons. In my life the main ingredient consist of God (the water) me and my two daughters. (Lemons). 

Every day I choose what type of sweetener I will add it to my lemonade. Depending on my mood depends on how the day goes (lemonade taste). I try to make sure every day that prayer and scripture is the main Sweetner of my lemonade recipe. So that my daily cup always taste perfect. 

I understand that you have different types of cups that you can drink out of therefore I make sure to drink the same amount everyday. Meaning I have a daily routine so that my day can run smoothly the parts that I can control. 

When situations arise sometimes you have to pour out your glass of lemonade and refilled a bigger cup with a little more of the main ingredients. 

Don't ever let your situation make you feel as though you are not in control. Because really you are in control. You have to make the lemonade you have to buy the ingredients you have to make it you have to mix it. you have to pour it in the glass and you have to drink it regardless to how it taste. 

When life gives you lemons always make lemonade. When your back is against the wall always seek a higher force to hold you up. 

Lemonade

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Get a GAME PLAN

Expect the unexpected. Sometimes you have to look at life in terms of a sports game if you like football, basketball, baseball, golf, hockey, gambling whatever sport you like look at your life like that and break it down. 

My parents both love basketball. My dad is a Shaquille O'Neil fan so he likes anything Shaquille likes and my mom is a LeBron James fan so she likes any team he plays for. When they hand me it really was the fourth quarter of their life. they were both past 35. They have both been married before and had children in those marriages. They both have been to college and graduated and started in their careers. So when I came about yes they were what they thought was the fourth quarter of their life I guess they said this is the longest quarter ever. Lol. Little did they know that was really the first quarter of their first game in the seven game championship. They had no idea what life was going to entail for them but they had to prepare through prayer for every second of the game they were about to take on. 

Having a disABLED child is not only a life changing thing. it is something you have to literally prepare yourself for every single day. You cannot keep the same game plan when you are dealing with different things. For them there blueprint to the game plan was always simple. it required prayer hard work dedication a team of doctors and therapists their family their commitment to themselves a commitment to each other and their commitment to all their children. But every day they had to come up with a different game plan to make sure the day ran smoothly. 

When they realized what the winning game plan blue print was going to be they were able to go through life easily. Not because life was easy for them but because they had came up with a easy to do gameplan. So of course they started winning, beating down all opponents in the form of obstacles that people are not used too. When things didn't go the way they knew to always pray first then contact via team of doctors and family members. 

For me and my ex we love football. Our favorite team is the New Orleans Saints. even though he decided to play in a football scrimmage game football doesn't have that many games and the season is not long enough, so I choose to look at my life in the form of a baseball season because they have so many games and so many series to get through to actually win a championship. When I had Trinity I honestly was really in the first game ever of my life. Yes she is I was the 2nd child and yes Jermany was three years old when we had Trinity however I did not have to do anything for Jermany because Jeremy came out the womb independent. Lol. Seriously that child was talking to at a-month-old crawling at three walking before nine she was eating table food before she even with eating cereal in a bottle. 

Since I had never played a game before I didn't even really know how to communicate anything about the situation to my ex husband and as a result we played two different games on two different teams with two different goals getting much different results. 

Once I came up with a good game plan I was able to successfully create winning results and now I am learning how to approach each game for the season in a much different way. 

Life is really no joke. And if you do not prepare yourself you could get lost in the trials in tribulations of every day activities. Always have a game plan set out for you so that you can literally tackle the day and win the game. 

Giving birth to a disABLED child IS NOT a game. dealing with life issues is NOT a game. it is something you have to take as serious as you take breathing. once you create a plan that will make sure you succeed don't look in no other direction but the scoring place. 

STOP NOW

30 Things to Stop Doing to Yourself::

1. Stop spending time with the wrong people

2. Stop running from your problems

3. Stop lying to yourself

4. Stop putting your own needs on the back burner

5. Stop trying to be someone you’re not

6. Stop trying to hold onto the past

7. Stop being scared to make a mistake

8. Stop berating yourself for old mistakes

9. Stop trying to buy happiness

10. Stop exclusively looking to others for happiness

11. Stop being idle

12. Stop thinking you’re not ready

13. Stop getting involved in relationships for the wrong reasons

14. Stop rejecting new relationships just because old ones didn’t work

15. Stop trying to compete against everyone else

16. Stop being jealous of others

17. Stop complaining and feeling sorry for yourself

18. Stop holding grudges

19. Stop letting others bring you down to their level

20. Stop wasting time explaining yourself to others

21. Stop doing the same things over and over without taking a break

22. Stop overlooking the beauty of small moments

23. Stop trying to make things perfect

24. Stop following the path of least resistance

25. Stop acting like everything is fine if it isn’t

26. Stop blaming others for your troubles

27. Stop trying to be everything to everyone

28. Stop worrying so much

29. Stop focusing on what you don’t want to happen

30. Stop being ungrateful

...JUST STOP

Go BEFORE ME

may the strength of God pilot me, the power of God uphold me, the wisdom of God guide me. May the eye of God look before me, the ear of God hear me, the Word of God speak for me. May the hand of God protect me, the way of God lie before me, the shield of God defend me, the host of God save me. May Christ shield me today. Christ with me, Christ before me, Christ behind me, Christ in me, Christ beneath me, Christ above me, Christ on my right, Christ on my left, Christ when I lay down, Christ when I sit, Christ when I stand, Christ in the heart of everyone who thinks of me, Christ in the mouth of everyone who speaks of me, Christ in every eye that sees me, Christ in every ear that hears me.

The BATTLE is not yours. We are WARRIORS

It can be so overwhelming. Not having the answers. Not understanding the problem that caused the situation. But being disABLED is not only hard for me but it is hard for my daughters and my parents too. Always having those what if thoughts. What if things were different. What if I could just make her like the rest. 

Well that was not the point and the only thing you can do is except the battle. and let God fight them. From the day I was born I was told I would not be able to walk talk Feed myself or even know when I would have to use the restroom. from the beginning of my life my parents were always given the battles the doctors thought I would face in life. They never told them about the victories they never gave them anything positive to look forward to just always a battle. 

And the crazy part about it is the doctors never ever gave them the proper equipment to face the battle with it they suggested all these problems I would face but never did they suggest where to begin. 

And when I had my daughter in 2008 it was really the exact same situation every day they were telling me what was going to probably happen but never would they tell me how to make it better. They kept giving me and my ex-husband battle after battle oh she may need a trake oh she may never walk old she may never be able to use her hands right. 

We were so overwhelmed we did not know what to do. I like my mother listen to everything the doctors said and Both of us at our individual time chose to listen to what they said. 

For my mother she depended strictly on prayer because the Internet was not even around in 1982. For me I depended on prayer and the Internet. 

Every battle they gave my mother she went out and found a team of warriors to conquer the battle. If they said I could not walk she put me in therapy at six months old. They told her I was not going to be able to talk she started me with speech therapy at six months old. No matter what the battle was she made sure to conquer it through prayer and prayer warriors AN professional warriors. And by the time I made three I was doing everything they said I couldn't.  

Every battle they gave me I conquered through prayer and the Internet and A team of warriors. when they told me trinity needed a trake I got on the internet to find another solution and then I found the Doctor Who could do it. When they told me she would not be able to walk I took her straight to my therapy and immediately enrolled her at four days old.  Same thing for her speech and when they said she Would never be able to eat out of her mouth I started looking for ways to develop her lungs and throat muscles so she could and then got the OK from a doctor to do it. And by the time she made a year she was doing everything they figured she wouldn't be. 

It is OK to get overwhelmed about the things that you are facing in life. But you have to always remember that the battle is not yours and therefore they're always going to be things and people surrounded around you to help you. Every battle begins with the feeling of defeat but ends with a victory. 

The battle Is not yours you are more than a conqueror surrounded with warriors. 

We REPRESENT YOU

It is a wonderful feeling when you log on to Facebook and the first picture you see is your seven year old daughter representing a entire summer camp program for a company. 

It reminds me that no matter what we go through in life God put us here for a purpose maybe it is to encourage others maybe it is to help others maybe it is to help ourselves but whatever the reason I know God put us here to do something greater than we even ever will recognize. 

When I was six years old I represented the united way cerebral palsy center this was a worldwide organization I was there poster child and my picture with my therapist in physical therapy was represented all over the world for their company. At this time I had no idea what it even meant to represent anything let alone  a entire company that represented nothing but disabled people. 

I went all over Louisiana raising money for children with disabilities we had a big picnic downtown in Baton Rouge where thousands and thousands of people came just to Shake my hand. 

I did not know what it meant at the time but just seeing my daughter on the owner's Facebook page representing something he loves so much truly makes me proud. Not only is she representing disable kids for this summer camp but she is representing all able-bodied kids too. 

We truly enjoy this camp last summer because they made her feel very comfortable in her own skin with her disability and I am proud that they selected her as one of the kids to promote their program for the summer. make sure that when you're out there living your life your children and you are in a position to always represent something greater than themselves.

stop STARING at ME

STOP STARING AT US.  why are you staring at me if I am not staring at you. I know we are cute. I know our hair looks good. I know our clothes are flawless. And I know I walk on a crutch and Trin walks on a walker. I know you never seen a normal person walking like this but it is us. So please stop staring at least have the courtesy to speak. This is what I want to tell every single person that gives US disABLEDivas a stare. 

How many of you living a disABLED life get all of those crazy looking stares? like what do I have something on my face? why are you looking at me? No God did not make me like you but God did make me.

All my life anytime I made an attempt to walk some where I had people giving me unusual looking stares. As a kid I really noticed it but I didn't notice it. once I made it to high school I realize people just really was not comfortable with somebody walking on a crutch for no reason. she don't look like she broke a leg so why is she walking on a crutch? 

Lucky for me my parents never made me feel different and as a result I was always able to be surrounded by ABLE body and disABLE friends and family who accepted me on a crutch. 

I think with strangers I would've been more comfortable with people asking me versus staring at me. people always wanted to know why I walked on a crutch. I mean you could see the thought going across their forehead. And now I know my seven-year-old Trinity has to deal with those same looks and I am like oh my gosh what do I teach her in this moment when we leave the house. 

So what have I taught her when people stare at you. I taught her what my parents taught me. I tell her to ALWAYS speak say hello how are you?  give them a smile and keep going. The reason why is because it is OK for people to have that question. we are unique and different but what you have to do is leave them with an impression of love don't ever make them feel uncomfortable because they are uncomfortable. You immediately give them ease when you smile at them let them know everything is OK and I am just as normal as you. 

For me and my last 33 years of life this has gotten me more prayers blessings and Friends verses anything else. a simple smile and saying hello will stop anyone from staring. 

HANDICAP ACCESSIBLE

My name is Ebony Simon I was born September 14, 1982. This should've been one of the happiest days ever. But instead for my parents it was one of the scariest days. They both have been married before. they both have children from previous marriages and they had one son together and here I am coming into their life giving them nothing but problems from day one. 

From the moment they met me they knew I was going to be something special and unique. I was going to require more attention then all of their other kids combined and I was going to require them to be completely 100% all in because this roller coaster given to them was going to be really rough.

They didn't know where to go what to do who to call they couldn't understand why they were being chosen to raise a child with a disability. at that moment my mom said all she could do was question God. I know what her thoughts were because I went through the same thing and all you can ask at the moment is really God really?

As a child I was always put in the regular classes even though I wasn't like any other child at my school. my parents never separated me or made me feel different they made sure that I did everything any other child did.

When it was time for me to go to middle school they made sure I was at a school that was accommodating to my disability needs still allowing me to be in the regular program.

When I made it to high school I tried a few high schools before I was able to go to the one that I graduated from.

When it was time to go to college the counselors did not think it was a good idea because of the setting so they tried to enroll me in a community college but I knew where I wanted to go to school and I refuse to go to any other place so I enrolled in Southern University.

my counselor agreed that I could go there but they would not pay for my schooling unless I went there and completed the first two semesters with a 2.0 GPA or higher. So not only did I do that but my first year I had straight A's and I was able to get my tuition paid for my books paid for and my supplies paid for for my entire undergrad and graduate enrollment.

After graduating from college I decided to work with people who were diagnosed with disabilities and from there I got married had two children and decided to create my life as a entrepreneur.

I currently work from home while raising my 10-year-old and seven-year-old daughters. In 2005 I got married and we had our first daughter this was a complete shock because the girl on the crutch was having a baby and it was just something nobody thought was going to happen to me. 

When Jermany turned three we found out I was pregnant with our second daughter Trinity and this was a complete shock we had no idea I was pregnant at all. Unlike my first pregnancy this pregnancy was a smooth breeze. I had absolutely no complications and every doctors appointment was perfect.

In November 2008 when Trinity was born we were expecting a healthy vibrant outgoing bundle of joy and she was just that for the first two daYs. God gave us something more unique than I was. Trinity decided after the first 36 hours of her life to scare us halve to death.

On the second morning of Trinity's life while giving her her morning bottle feeding Trinity started to choked on her milk. I remember sitting there watching white stuff come out of her nose and mouth screaming telling my husband to go get the nurse something is not right.  as a result of this she was rushed to the NICU even though we didn't know that at that time. From there she would spend the next 20 days being a subject of test and procedures trying to find out why she could not swallow her milk. 

At that moment when the nurse took her out our room. I was confused lost and after literally five minutes I told him to go get the nurse she took my baby and after 30 minutes she told us to come with her and I remember my husband pushing me in the wheelchair to go see her and I was terrified I was crying I didn't know what was going on and I just remember him saying everything is going to be all right she is a Wheeler mixed with Simon blood. She's going to be alright. 

So we roll from one side of the hospital to the other side of the hospital and I'm crying questioning God and praying for a miracle.

You see I didn't mention my husband and I had just reconciled. And life was dealing yet another blow. So you know the amount of questions I was asking God but I could not stop praying to him.

When we got to the NICU we found our daughter full of tubes from the nose and mouth incubated on a breathing machine. I lost it. all I could do was cry I didn't know what was going on and I couldn't understand what was happening. I just knew something was not right. nobody was there to tell us anything they just kept telling us she was going to be fine and they were trying to find out what was going on. no one was there to talk to us. no one was there to comfort us. here we were 26 years old married for 3 years a three year old daughter just getting back together after a serious break up and now this I was really really about to lose my mind.

After sitting in that hospital every day all day watching my baby go from doing absolutely nothing to doing 100% better I started to get bored. I started to do my own research and therefore I diagnose my own daughter and told them what to look for. She had a swallowing problem and it was like she was drowning in milk every time she tried to drink once they told me this I was able to give them different procedures to do on her so they could figure out the best way to treat her and once we decided that The feeding tube coming from her stomach was the best route to go we had that done. And life got extremely better. 

The week of Thanksgiving in 2008 I asked the doctors that were treating Trinity if it was possible to send us home. they had put the feeding tube in her stomach my husband and I were able to feed her with no problems and they had diagnosed her with congenital Hypomylinating neuropathy.

Once we got home we were able to learn how to live what we consider a normal life it was full of therapy doctors appointments. And of course church.

Trinity is currently seven years old and I am currently 33 year. we both are living with our disability as normal individuals we do everything we want to do the best we can do it. there is nothing we would we do not attempt to do.

Trinity is in the first grade and attends a regular school in a regular classroom setting she walks on a walker and I walked on a crutch every day for assistance. our oldest daughter Jermany is in 4th grade and helps around the house with anything we cannot do.

I am currently a single parent raising both of our daughters. My husband and I divorced in November of 2014 and remain best friends. I do the best I can and I try my best to make sure I show them that there are no limits unless you create them.

I currently work from home as a independent BeautyTainer for Tyra Banks and I am enrolled in the Steve Harvey Success Institute 16 weeks success program. I have a bachelors degree in rehabilitation services from Southern university and I have over 40 hours in my graduate program going towards a masters degree in professional counseling.

Trinity and I both have A form of muscular dystrophy called congenital myelinating neuropathy I have the mother version which is hyper myelinating neuropathy and she has the daughter version. This disability is a weakness of the nerves and muscles and it slows down the developmental process of your nerves and muscles in the beginning stages of life.

As a result of us both having this disability we cannot feel physical pain cannot run can not grip things with a firm grasp or walk in heels lol.

Our limitations or limited but we are still able to do most anything you can. We understand God is in control and has the last say and therefore our prayer is to be able to live a able-bodied life in a disabled body with no regrets helping others do the same.

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