Hidden Pain and True Intentions

I began this blog many years ago. In fact, almost 13 years ago this week. A lot has changed since this blog began. I thought I would do something in this world to do good for others, despite the challenges I faced all my life growing up. I have, and I did. It wasn't without the help from those along the way and those who have stuck by me the entire time.

Many of you know the life of abuse, trying to meet the standards of what others think you should be. The ironic part is to understand that the people who say they love you and the ones who are to care for your cause the most are the ones that hurt you the worst. I am not sure what I am supposed to be learning, even at the age of 51 going on 52.

I have experienced the unbelievable in my life. From greed, envy, lies, deception, being used and disposed of like you are a wrapper that holds a piece of candy and a hamburger you would eat. Discarding people based on the pure bases of money and greed alone. It's not truly about helping people; it's about benefiting one's self. Those people will burn in an eternal fire they have yet to face. Deceiving others who are so desperate to make their own happiness. Trusting those who have lots of money and no strategy preying off them just to make a buck.

I have learned today what real evil in the face of good does. I have learned how people could crucify a man that had no blame only because He wanted to change the world and give them a life worth living. I indeed saw BLACK, GREED, SELF-SERVING BEHAVIOR today in its utmost RAW FORM.

It is an attack by the darkness of this world allowed by those who don't know the true God in this world and do not know His power, and they can't comprehend it. It's a BLACK that ruins relationships, marriages, careers, livelihoods. It's a blackness I saw hover over me at the age of 13 in my bed, paralyzed huddled undercover, watching as a black, evil red-eyed demon came over me, blinding me, terrorize me from the inside out. I had just made a profession of faith in Jesus that year and was battling being molested by a faceless beast I still can't remember. Maybe that was what I saw in my room that night? Life's reality was distorted, and I was sheltered, yet was living a life of hidden hell I was never to speak of. Over time I began to express my pain and anger after I was out on my own. Counseling taught me what normal should be, yet I gravitated to" my normal" dysfunctional relationships, never saying anything to anyone because of shame and failure I would be so "stupid". I was too beautiful and smart to go through such things. My experiences led me to be the fighter I am today. I no longer take flight and run; I stay and fight because I will no longer be abused or taken advantage of. However, I still wear my heart on my sleeve, making myself vulnerable to those who may or may not be who they say they are. I don't judge unless you give me a reason to believe. But when you are found guilty in my eyes, you will rue the day you ever crossed me.

Today, I saw and felt the betrayal of those who I have helped throughout their time with me turn on me, AGAIN, and disregarded the sacrifice I made to help them be successful. Would those who have discarded us benefiting and excluding at the celebration and glory of achievements, where would they be without the people who helped create their path to success?

I might not be everyone's cup a tea. BUT BOY...sometimes you just don't know when ya gotta good thing. I believe that bad things happen to good people sometimes because they are doing something right. The hardest thing is loving them anyway and showing people that sometimes you are much more than you than others are willing to recognize.

Job lost everything, but he stayed faithful, and God blessed him with much. Kind David sinned and lost his child, suffered the consequences of his actions, but God still used him to do great things. Solomon fell for a woman and told his secret, suffered consequences, yet left a great legacy. Jacob did EVERYTHING right, yet he was sold by the people who said they loved him the most and God blessed him. Abraham was told to sacrifice his own son, and because his heart was right, God spared his son and blessed him with great things. Paul was named Saul, an evil tax collector who followed Christ and stood for what was right and was sacrificed upside down after being thrown in prison for NOTHING he did wrong, only for believing in what was RIGHT and Godly.

All these people mentioned in the most historical book on the planet, the Bible left a legacy that people over 2000 years later remember and live by. Believe or don't believe. I choose to believe because I honestly really have NOTHING to lose. I am NOT A SAINT, I AM NOT PERFECT, I GET MAD, I DRINK, I CUSS, and one thing I do know... IS I AM FORGIVEN AND SAVED BY GRACE! People in this world are NOT MY JUDGE! GOD is MY JUDGE! He will judge my Heart; HE CARES NOTHING about politics, other people's expectations of you, how much money you have, or the GOOD DEADS you DO. He cares about YOUR HEART! IF I DIE TODAY, I WANT PEOPLE TO KNOW MY HEART, NOT HOW MUCH MONEY I HAVE, CARS I DRIVE, CLOTHES I WEAR! BUT IT IS WHAT I DID FOR PEOPLE! You judge me all you want... It doesn't MATTER WHAT YOU THINK! I ONLY CARE ABOUT ONE THING. What I did in this life to show that GOD truly works through people that are NOT PERFECT! REMEMBER THAT! NO ONE IS PERFECT!

The Need for Endurance

It's been quite some time since I have written my thoughts down. I have so much to say and not quite sure where to even start. The last three years of my life have been filled with trauma, heartache, disappointment, yet it has been the most surreal life I ever thought I would experience.

Three years ago I had quit my job of 23 years.  A career in teaching science to students ranging from 11-66 years of age. I taught college for 2 years, then high school for 7 years and on to middle school for 14 years.  I'm an expert in all science subjects from physics, chemistry, biology to geology and everything in between. I never knew that my experience teaching would ever lead to founding a nonprofit. I knew that the skill set I had I could lead it to help patients with SYNGAP1 find treatments.  I personally gave up a lot, my family gave up a lot. Not that being a teacher I had much to give up material wise, but it was everything I had to try and move forward what I thought was the right way. It has been the right way, the only way to lead to treatments. It is working and the model blueprint is one that many are following and wanting to replicate in the space in which I work. 

Leading an organization in a direction takes strategy. We must make sure that we were doing everything we can do on a shoe-string budget. This was a calling, this IS my calling! Many do not know that I gave up my retirement, salary, benefits and life savings to put into the job I love now to make it work. I paid for all my own trips and most of the overhead for the first 3 years of the organization until I was hired for one thousand dollars a month. Thing is, not many cared that I did that. 

That sacrifice has cost me much along the way. This includes time with my family, a decent wage, my marriage and I could name a few other things but the list would just go on. Yes, I chose to do this, as I was reminded repeatedly by those who said they stood by me to help. Only to realize they were only drilling holes in the boat you were rowing to try and make something work. Those didn't stay. They didn't believe, nor did they have the endurance to see it through. It is better that way. People who do not share the same vision become stumbling blocks.

I work very hard, just like the majority of the people who support our efforts for our community. I have a really hard time when those that had been with me since the beginning and who KNOW me have anything different to say. It is disappointing that a few do. It is true, you can't please everyone all of the time. You can only please some of the people some of the time. Standing back is the hard thing watching all the way through as people try to undermine the hard work you are doing. This work will still benefit them in the long run. I will never understand it. I was taught a long time ago that there are wolves in sheep's clothing. I never realized they could be in your own pack. However, it was encouraging that one of my colleagues I work with sent me what I needed to hear when I was at my lowest point.  

She sent a message and said to me, "Endurance is Mandatory"!  Therefore don't throw your boldness, which has a great reward. For you need endurance so that, having done the will of God, you may receive the promise.  Hebrews 10:35-36  

She reminded me that if God called me to this job, then those that fight against me is not really me they are fighting against.  They are fighting against God.  I have poured so much energy into doing what is right, and God has given me the endurance to continue. There are days I have sat in a corner or lying in bed in tears sobbing, asking the question why? Dealing with the sleepless nights and worrying about what to do next. The depression I have been fighting and the choice I made.  Asking myself when will it pay off?  When will we get treatments? Will my son benefit? Will the community be disappointed if I can't deliver? What if I can't keep hope alive?  The questions I have and the weight of the world on my shoulders are killing me. I had to keep believing. I have to keep believing. 

Not many know my personal story. Eventually, my story will be a book. If I could tell anyone anything, it would be to never lose hope, continue to persevere and NEVER put limits on yourself. My parents were told by my 3rd-grade counselors and teachers I would never read above a 3rd-grade level. Fast forward to 10th grade, the counselors told my parents to not send me to college. They went on to tell them I would never succeed and were setting me up for failure. They also said I would be an incredible hairdresser! That same year they determined I was dyslexic and had several other learning disabilities. My parents never told me this until I walked across the stage to be given my Bachelors of Science in Biology. I finished it in 3 1/2 years. I never failed or dropped a class. My heaviest load was 18 hours in a semester. I went back to get my Education Certification to continue on later teaching 16 years in the same school district in which my parents were told I wouldn’t make it in an academic setting. THEY WERE WRONG! The rest of the story will be detailed in my book...never put boundaries on a person's abilities. 

I fight depression every single day. I want things to be different.  I realized that the only way to make things different is to keep going. Pay no mind to those who come against you. Stay focused. Rest if you need, but get right back up and fight the good fight.  Don't let others who don't understand your vision keep you from seeing what has been put in your heart. 

Coming Out of the Dark

Most of us in life have been hit pretty hard in the gut at times.  I am no different. Sometimes things happen to make our perspectives change about people, their intentions, and motives. Life is one experience after another.  The last two years have been the best and worst of my almost 50 years on this planet.  I have dealt with egocentric, arrogant and self-serving people who wear masks to get what they want.  I have worked with people that are so insecure about their own existence and let their envy and jealousy of others take space up in their brains, which eventually leads to them being unhappy and unproductive, then turning on you to be your worst enemy.  These combinations of people are what make life extremely difficult to navigate, especially if you are a people pleaser like me. I allowed these type of people all of my life prevent me from being who I was suppose to be. I can now say within the last few months of my life, I now understand that your calling is way more important than pleasing those who really don't give a shit or are the "right fighters" in this world.  They would rather be right than work towards a common goal.

This has all played out during a tough time in my own personal life.  There have been days I would go so deep into the darkness that the words of those who critique your life, personality and your drive seriously wanted me to slit my own wrists.  All my life I have been searching for affirmation, the acceptance that what I was doing was "good".  It is daunting.  My childhood was not a good one mentally or emotionally, yet I had almost every material thing I could ask for. It led to who I am today. I struggled to please the ones who were supposed to love me the most. I knew they loved me the best they could only because of how they were taught.  I never measured up to the expectations of what they thought I was supposed to be. However, it made me into the fighter I am today.  The downside, it allowed me to have high expectations of others, and they couldn't meet them either, causing me stress and frustration. To top it all off,  I struggled through school having to deal with multiple learning disabilities.  I was called dumb, lazy, stupid and for lack of words felt like I was the most unworthy person who walked the planet. I was mocked sitting in the "special classes". Funny, people laugh when I tell them I couldn't even get a date in high school. I was expected to sit pretty and keep my mouth shut. 

After the last few months, years I hit rock bottom.  The lowest and most devastated I could ever feel.  My rock bottom almost caused me to lose the one thing I love the most, my family and my children, my life.  The dark depression I was experiencing made me escape into fantasy land and working overtime to avoid the emptiness I felt.  It was incredibly lonely at times.  God was nowhere to be found, the one thing I had always depended on to get me through.  I lost faith. I lost myself.  The one thing that woke me up was the calling I had to continue what I had started.  It is a still small voice that whispered.  "I am here! Look up at me and know that I am here".  I glimmer of light.  To be honest, the thoughts of ending the life I knew was real.  I woke up. I had forgotten God had a plan for my life regardless of those who come against you. The depression had consumed me to believe that I was no longer needed here. Yet it allowed me to see what is essential and most importantly WHO is critical and that I am important.  The other no longer matters. This is God's plan, His work and no person can destroy what He has planned.  I am just coming out of the dark, trying not to allow those who are good at sucking you back in affect me.  Baby steps.  Every day I must choose to keep going and focus on loving myself, which does not come naturally to me. It is a commitment mentally, just as I had committed to work out four times a week for the last 5 years to keep my physical body in shape.  It is now time to keep the mental and emotional self in shape. I now need to grow a thick skin. Sometimes it takes a swift kick in the gut to get you to come out of the dark to find the light again.

     

The Hard Part

I keep saying I am going to write a tell all book one day... Well, it may come sooner than later.  In my almost 50 years of living these last 2 years have been the hardest to cope with.  The excitement of working to try and change the lives of others has been incredibly daunting.  I thought that doing something you love would bring great joy all of the time.  Which by no means doesn't mean I don't still love what I do, it just means I have had to deal with more people, more personalities, more points of view. Now it's coming down to the hard job of separating my personal life from work and dealing with problems circulating around business.

The line between being a parent and a leader of an organization has to be drawn.  The emotion and distinction between the two can't be mixed.  You are either a leader or a friend.  When it comes to business I must take the parent hat off and look at decisions made objectively. Removing ALL emotion to do what is best to focus on a mission I set out to accomplish.   That means sacrificing even more to get the job done the right way.  I didn't understand what it meant when said "It's lonely at the top".  It is lonely at the top.  I have realized so many things about human nature and how success changes the people around you.

I think sometimes people forget I am also dealing with the challenges of caring for a child with special needs. Grieving the loss of a son I will never have and accepting the fact I have to let go of the hope that what I am doing may never help him.

I am devastated by the fact that I have people thinking I am doing is all for selfish gain and to control. I am a person who has a calling to go out and try to do the very best I can. Paving a path for others that come behind me to make a better life for their loved ones. The most important part, to know they are not alone.  They may not like the way I have chosen to create this path or even the direction to keep it going, but it will not stop me from continuing. I will go with those who choose to help. I don't put on shows and I don't expect anything extra but respect.

My son and family live without me being there much of the time because I chose to help find treatments for others. My family has sacrificed relationships, money and mental health issues for this cause. Of course I chose this, my question is why wouldn't have anyone chosen to do this for my son? Why did no one else in the world step up?  Then I am questioned about my motive.  I have wanted to quit and leave it all, but who would do it?

I keep going because the few who don't understand or try too are not my concern.  My mission is to help ALL those that walk into my path.  I do what I do, because if I stop I would regret living knowing I missed reaching the goal for another to have a better life.  MY SON IS WORTH ME NOT STOPPING!  It's been an emotional last 2 years with the struggle of severe depression, thoughts of suicide of loved ones, therapy, antidepressants, a broken marriage trying to recover, financial burdens and then trying to find yourself and just love and acceptance.

The last few posts have been dark. This is real! This is life! This is me trying to cope.  As long as I am alive I will not stop and I will not give up the fight to find hope and happiness.  I will plow through the mud and dark hours and one day I will reach the light I am working so hard to find.

Announcing!!! Bridge the Gap - SYNGAP Education and Research Foundation

I am excited to announce our new organization called Bridge the Gap - SYNGAP Education and Research Foundation.  Our mission is to serve, educate and fund research for families coping with the effects of SYNGAP mutations.  We are the first foundation to specifically raise funds for research and awareness for SYNGAP.  In the coming months we will be focusing on development and fundraising.  Co-founder Olga Bothe and myself will soon announce our Board Members and our Medical Advisory Board and the launching of our new logo and website.  It will be full of information, patient stories  and current goals of the foundation along with valuable resources for families.  Please check out our Facebook page and Twitter Pages for current information.

Facebook Information Page:  https://www.facebook.com/Syngap1?ref=hl

Facebook Page: https://www.facebook.com/bridgesyngap?ref=aymt_homepage_panel

Twitter Page: https://twitter.com/bsyngap

 

We have launched our first fundraiser for the Bridge the Gap and would love to see your pictures on our new donor wall we are building. 

 

Check out our wall!http://www.memsaic.com/v2/01D4C9B2A6E3D3/wall

We also just joined #giveRARE to raise money for my #raredisease. You can sign-up your nonprofit at www.giverare.org. Let's do this!

 

After Beckett's Functional MRI - Texas Children's Hospital

This is all for this little boy and his friends with SYNGAP.  These precious people can suffer from many types of seizures, intellectual disability, the ability to speak, sensory disorders and many more symptoms this rare neurological disorder.  We want to help theses individuals live better lives and with your help they can.  Research is going on now to find better therapies, but funding is hard to find.  Please help us help them. 

 

Our goal one day is to be able to help families off set the cost of the continuous burden of medical expenses and provide resources to relieve the stress of raising a child or being a caregiver of a specials needs individual with SYNGAP.

 

Please Share and Tell people you know about us.  There are more individuals out there yet to be identified.  We appreciate any support you can give us. 

 

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Update on Mr. Bean: 

 

In the hustle and bustle of things we have been keeping up with our little Bean.  He is doing quit well on his new medicine and his meltdowns have seemed to subside some.  His language is still developing and is trying to say more words.  We received part of his MRI update before the Christmas Break.  He has had only a very small measureable amount of change in the myelin increase in his brain.  There are still spots of undeveloped myelin in his brain, which is expected usually in children with intellectual disability. We are still waiting on the functional MRI results to tell us exactly what parts of the brain are developing normally or abnormally.  We are also participating in a research project through VIP connect.  They are studying several gene mutations linked to both developmental delay and autism.  All four of had our blood drawn and they will bank the blood and as science catches up they will test it for any identifiable markers.  His sister wasn't to thrilled with the needle stick, but she took it like a trooper.  Beckett seems to be a pro now and was ready and rearing to go. 

Beckett is a pro

 https://www.simonsvipconnect.org/

Pyper's dad is a goofball...she's a trooper