Behind Closed Doors

Exactly 11 months ago today, I wrote in my blog.  A lot has happened in those 11 months.  Things I never imagined, yet they were not unexpected.  The trials, wear and tear on a relationship that was falling apart behind the scenes, and no one but those closest to me would have a clue.  The events that led up to breaking the end of my nineteen-year marriage to the father of my twins, Beckett and Pyper, had finally come to a head.  The birth of our son with special needs was the catalyst that broke the bond we had, where it was no fault of either, we just went in two different directions, and it wasn't together, but apart.  

People cope with grief differently, and when you have continuous stress and no relief, the weight becomes unbearable.  The challenges have not all been due to the break up of a marriage, but also professionally.  The things I have experienced in the last year, if I didn't have written proof of what others in your own tribe could do to you, no one would believe it.  The challenges of leading a nonprofit and having the people you are trying to help turn on you.  You then have to reset, step back and understand that even though they are purposely hurting you, they are only doing it because they are hurting themselves.   

"Pray for your enemies," my mother always says. I couldn't.  I didn't for a very long time.  God brought me, not just to my knees, but my face.  I quit asking myself why people do the things they do and have to re-learn to check myself and continue regardless.  I still am. I am at a crawl.  I was forced to slow down.  That is not something I am used to.  

 

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 Lighter Side

Funny, as I have just gone through another nervous breakdown and took about 2 days to only gain partial sanity back.  I was reflecting today about the things I have learned throughout this journey. I will share with you the things both good, bad and royal pet peeves that I have experienced throughout this journey.  First, I want to start by saying; the worst phrase any other person that has not gone through this before is, "That God doesn't give you what you can't handle"!  I CALL BS ALL OVER THAT!  That is the most absurd and ridiculous statement anyone could say to a parent of a child with special needs.

I mean seriously, you think He gave us this life to make us "handle it?"  Dear God People! Get your head out of your ass!  Any person that goes through a hard time has to either cope & deal with it or just go off into the deep end.  Seriously!
I mean really?  What am I gonna do?  Just be "happy and strap my ass in for the ride?" Come on?  No, we live just like anyone else.  We may have more breakdowns than most, but that doesn't mean we are stronger than the next guy out there.  As you can see, that is my biggest pet peeve.

I have learned more about life and people in it and their real motives behind why they do what they do.  It's quite sad in fact that you have people who are aiming for the same goal, yet sabotage the efforts you put forth because of their own self-serving attitudes.   Yes, those people will be in my book. Don't worry. I keep all the written documentation to prove otherwise. It's quite surprising what people actually put in a written word that they think will never see the light of day.  To them, I say; thanks for the new material!

But on to the lighter side.  I have learned many things in these last 10 years that I never once anticipated.

#1 Nervous breakdowns are regular occurrences. No way of getting around that, they just happen. I seriously should buy stock in Kleenex and wine.

#2 A therapist is an absolute necessity, no way getting around it because they understand more than your friends and/or spouse, plus they are sworn to confidentiality and can't go talk shit behind your back like some of the other people you realized really weren't your friends, to begin with.  Ummm?  Maybe I should have everyone sign an NDA and sign a "real friend" contract before disclosing any useful information that they could take and write a book for themselves. However,  I do have a few close friends who I trust with my life, but then I got dirt on them too.  ;)

#3 Marriage entirely is non-existent, and sex. Yes, we live together, but the lack of time building a relationship is put on the back burner due to the fact you are either getting over the nervous breakdown or just dealing with all the other needs in the family. Most of the time we walk by each other and say "hey, you get the mail today?"

#4 I learned there are more Cabernet and Blended Wines in the world I have not yet tried. HEB here in Texas has a selection that I could honestly spend hours in.. So, is it wrong that the grocery store manager knows you by your first name in a city of 8 million people? Ok. I am jesting people..kinda.

#5 I never ever need to go to school again.  I know more about the human brain than most Ph.D.'s.  Ok, well maybe not that much, but enough to get people to question if I am.  I just expect an honorary doctorate from somewhere before I die.  It's a bucket list item.  I learned you don't need letters behind your name to prove your worth.

#6 I need to get paid much more than I do for the things I do.  Yes, I said it.  Being a teacher for 23 years, it made me realize that we are worth more than they give.  That this is true for those, who lead nonprofits as well.  The old adage, you get what you pay for.  If you have all the volunteers, then they won't do a job like its a "real job." Well, not me, but others.  This is my calling. I did for nothing for over 3 years. Thing is others expect to work when they want to or not at all. You pay people, you will have better quality work and program outcomes. Part of it is understanding and having the right people backing you to get the mission done. Funny thing about that too is people just can up and walk away from the mission and their commitment, that's ok.  But for me to walk away, absolutely no way!!  Surprisingly to think a couple wanted me gone through this whole process. Funny, neither of those people did shit to help the cause either. Those backstories will go in the book as well. Wonder who would have stepped up and taken on the projects and programs and done the exact job I am doing now? Then never measure up to their own responsibilities. I have NO respect for you! That's when I learned people can kiss my ass!  By the way, next time you see me come to say "Hi"! Some may even say it's unprofessional to bring up. I call it being transparent.

#7 Your future is dismal if you have no support.  In my case, the family has just gone on with their own lives rarely calling to check in or even to come by to say hi.  Very disappointing!  So I learned to stop expecting things out of people because you won't be disappointed when they don't do what you want.  Consider it a gift when they do come around.  I learned I need to depend on myself. I continue to chug through, and on bad days you see it through every minute hoping that the next day will be better.

#8 Social media is a farce! No matter what.  Anything you post is going to offend someone.  Me to You.. Get over it!  I usually tell them to suck my big toe.  I will not change who I am for you or anyone else.  It also has become a necessary evil.  Great free advertising and a tool to drive depression that shows everyone in the world your life is excellent.  PLEASE!  Your life sucks behind the scenes just like everybody else..LOL! No one walks around with no problems.  EVERYBODY HAS PROBLEMS, especially us families raising kids with special needs. Keep scrolling if you don't like what you see. If you judge me based on what I post, then you aren't my real friend, and we don't need to be connected.

#9 There is NEVER enough money.  No matter how hard you work, there is always something.  But, there is still enough left for wine!

#10 Who said leaders had to act differently than the average joe?  We are people, we shop, we raise families, we have marriage problems, get divorced, separated, have financial issues. You name it we experience it.  Leaders aren't perfect.  But I learned that the world expects you to be "different" when you are facing the public. My dilemma,  I don't really care what the public thinks of me.  As long as I am doing the job I was hired to do and am performing at a rate that is not backward, then people can't say much.  Pick me apart... I bet I could find many skeletons in closets of those who are so ready to judge that would make your hair curl and skin crawl.  Being a leader doesn't mean you never fall or fail, it means getting back up to complete the tasks at hand the very best way you know how.

In closing, things always come home to roost.  Never underestimate a person that has a calling and doing their damndest to help those in need.  When you can match up efforts with the person whos kicking ass, then and only then do you have the right to criticize anything. Its then on you to do your best to carry the same load.  These are the truths I live.  If people have an issue with me being real, then that's your problem to bear.  Not mine. 

Searching for Peace - Being Real

I have to admit, the last two years of my life have probably been the most productive and yet the most daunting I have ever lived in my life.  Change is coming.  I am trying to let go of dreams that will never be and focus on the things that are supposed to matter the most.  I can't differentiate between the two.  Do my personal needs to go first and everything come behind or does the mission come first? I am struggling with the demons and experiences of my past and looking to the future never wanting to continue the same pitfalls as before.  My childhood was a hard one.  I had every material thing I could want.  But the expectations I had to live up to being perfect has never escaped me.

I have been married twice, which I never want to marry again.  I never want to trust another person to fulfill the needs I crave. Yet I long to be loved and desired.  This is what it has come to living and dealing with the sadness of losing the life you thought you would have.  I feel selfish and not sure how to even feel.  The job I quit was the first problem, the second is not having the ability to change my life now due to the extenuating circumstances.  I know I need to be elsewhere to make the mission I set out to do be a success.  The dilemma, do I leave everything behind and do what I was called to do without the support I thought I would have.  Or do I stay and be miserable and unhappy for the sake of someone else's happiness.  I have literally hit rock bottom.

I don't see the light at the end of the tunnel.  I am coping with so many things I wish I could put on paper, but can't. Only a few know the inner workings of the last two years.  The loss of love and a life I was trying to navigate. I was deprived of being free because of the closet I was raised in. I was jaded trusting everyone thinking always others had the best intentions. I never was truly being loved or felt loved by the ones who were supposed to unconditionally. Making me grow up insecure and question my own existence in the world.  Therapy, anxiety pills and every so often glass of wine has been the coping mechanism.  I depended on people who I thought truly cared about me, take what they needed and leave.  I am trying to stay focused on the mission to find my son and others a treatment, but I can no longer do it alone.  Some of the people I depended on to help have fallen to the wayside, leaving me again to fin for the success of what I had set out to do.

I don't think the cavalry is coming.  Just like I know in the current circumstances there is no one coming to meet the needs I have.  I realize high expectations are what lead to depression, but where do you draw the line?  Everyone says you need to make yourself happy, but to make myself happy I would leave a wake of hurt in the path of me trying to be happy.  Is it easier to become numb?  The last 10 years of this journey raising a child with special needs has broken me. I feel like I have to live forever.  People see the smile on my face, but behind that is a person who feels unloved and just another pretty face.  I hang on only because I hope tomorrow will bring answers and relief. Waiting for peace. The struggle is real.

Stonewall

Have you ever looked at a stonewall?  The ones I saw were old, ruined and tattered, but rustic, peaceful and beautiful. They typically last a lifetime or more.  I had made a trip recently to an old historical town, and much of the architecture was of stone. Many stonewalls surrounded the perimeter of the properties.  I wondered how long it took a person or persons to build a structure as tedious as that.  First having to find the stones, haul them from their resting place to the location they are now.  Cementing them together to build a wall that stretched many yards and sometimes it looked half a mile long.

I thought about my own life and how it relates to a stonewall.  The beauty of the random shapes of the stones and beautiful colors of slate grey and random orange and red streaked threw out.  The edges of some were smooth, and yet some were jagged and rough giving it character.  The appearance of these beautiful stones made by the harsh weathering and pounding of the elements.

I think of my life as this stonewall. The challenges and many defeats of living a life I never thought I would have too.  Trying to survive depression, anxiety and the day to day.  Sometimes having nothing to look forward too also. I find myself feeling guilty for feeling this way.  My son Beckett is doing outstanding.  He is flourishing and making incredible progress.  His seizures controlled, he has close to 500 words where  3 1/2 years ago he had maybe 30.  His behavior has improved, he is learning and making leaps and bounds with problem-solving and following directions.  I should be happy, but I am honestly not.  I feel I try every day to get closer and closer to freedom and relief. It doesn't come.  I keep hoping and try never to lose hope.  I wish I could have the life I dreamed.  Happy, in love, secure and not having to fight anymore the battles to make our lives better.

I thought of my life as this stonewall.  Every aspect about it, the energy it took to build, the weathering it went through to be as beautiful and spectacular as it has over the many years it took to get that way.  It is still standing.  Standing firm, ready to fight another day with the elements.  I try to keep going, but some days, one of those stones falls off that wall.  I saw the rocks on the ground. I wondered who would come by place those rocks back where it used to be?  Who would be the one to go and put me back together?  Some of those rocks have been waiting a while to be put back, but then there are others that will remain there for a lifetime. Even if they stay, they still become a part of the beautiful landscape that surrounds the wall it once belonged.  I guess in either place, either the wall or on the ground you still are a rock.  A rock for others to build from and sometimes to sit and be a beautiful piece of the landscape.  Either way, it is difficult to be either one.  Even feeling alone, I still am the rock on which my son and family depend.  Weathered, tattered, and rough around the edges. One day I will find the beautiful happiness for which I was meant to have.  This stonewall will not keep me prisoner of the happiness I deserve.

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.

Broken

Have ever been broken? Almost like someone has taken you and ripped you into two, not even just two parts but into shreds? Your heart, mind, body and your spirit just cut into pieces all at once.  I am broken, tired, worn out and struggling to keep a smile on my face. Smiling through the tears. That's what it feels like to live and deal with a rare disease every.single.day!  How does one cope? Get up every day and face the same thing?  No treatment, no cure, and sometimes the feeling of hope dies, and that is a feeling of being broken into many tiny pieces.

Then the question comes, who will help you put it all back together? I find myself many days sitting alone wondering if anyone cares?  You hear silence, thinking in the back of your mind that maybe someone has to care as much as you. Waiting for a knight in shining armor to rescue you from the despair that overcomes you. Someone to help and maybe depend on them to carry your torch if you can't.

Funny thing about admitting these feelings is people judge you and question your ability to keep going on.  Hasn't everyone been there? The impression that no one cares as much as you.  I'm struggling to send the message about my cause getting others to see the bigger picture. Why can't they see? It is infuriating.  I ask myself why I keep on going doing what I do. I want to quit.  I want to stop and be free and let go. Would anyone care?

I can't do this life alone. I don't want to feel alone doing it. I find myself sometimes being trapped in a vortex of emptiness and loneliness because I can't get others to see what I see.  No, I can't control others perspectives or make them believe in my mission.  So what do I do?  I cry. I pray. I ask why and then keep going.  I have too.  I have no other choice but to keep going.

My son and the patients like him, their families are depending on me to keep going.  But then I think about mine.  I feel guilty when I leave, but then I love to travel.  I feel sad I quit a secure job with benefits, retirement, health insurance, but I risk it all because I knew in my heart what I was doing was the right thing to do.  I've heard that it was my choice to quit and I should expect to live a life of less because of the career choice I made.  People, even a couple of family have said that I am in this for fame and popularity.  I don't understand how this can make someone think this way.  I am not about that nor can believe why others would think that as I sacrifice my time, my own money, my family to find a treatment. For I know in the future will benefit millions.

Please mark my words.  The discoveries that will come to light will not only help our own but many others related to them.  One day people will see what I see.  One day people will be there to help. One day I will find the hope I have been searching for so hard and long for. One day we will have a treatment.

One day I will be free and no longer broken.

The "Rare" Butterfly Effect

The Miracle of the  “Butterfly Effect”

"Butterfly Effect"

We have all heard of the "Butterfly Effect" at some point.  Wikipedia simply defines it "is the concept that small causes can have large effects.”  Initially, it was used with weather prediction but later the term became a metaphor used in and out of science.[1] In The Vocation of Man (1800),German philosopher Johann Fichte noted that "you could not remove a single grain of sand from its place without thereby ... changing something throughout all parts of the immeasurable whole."

Living in the world of rare disease I have noticed, like Fichte, how one small change can have so many different outcomes. The accumulation of small things is not small I am guessing the same applies to any "sub" populations in which we live.  I have found The more you expose yourself to criticism the more people are quick to judge and pick you apart.  The more successful you are, the more genuine feelings and truths surface about how they "perceive" you and your "real intentions" behind what you are doing. Some of those are not exactly positive. This could go either way. People who were "nay-sayers" in the beginning all of a sudden see success and and try very hard to wedge their way back into your life to "get a piece."  Ones who aren't quite where you are, who have walked with you side by side to help; want what you have and snicker behind your back, envying you in your journey. Then you have "true friends" who stand by you, encourage you, don't block you out and are "gingerly" honest with you.  I realize it is nothing I have done to make people feel this way, I only hope that giving hope to others will rise above and overshadow the negative in this world.

Motives and Attitude:

I guess this brings me to my point. Our motives and attitudes drive the future of what you are wanting to achieve.  It can be productive or destructive. People tend to be judgmental by nature and how one presents their opinions and views can literally destroy the momentum of someone's mission.  I was warned in the beginning that putting yourself out in public would be difficult and to be ready to have a thick skin.  Wow!!! I actually questioned this notion and thought to myself, "Why would anyone want to destroy or bring down a great cause that could help so many?"  I had to sit back and think long and hard about why someone, ANYONE would want to do this.  People are out there doing that to people out of their own insecurity and lack of their own purpose.  How naive was I? Regardless, I see it as just that. A human weakness and struggle. I personally will try and continue to build people up regardless of how they see me.  I will continue to be myself regardless, of how I talk, dress and share my life with people.  I can't be everything to everyone. I hope that others don't expect me to be everything to them. We can only do the best we can and continue to fight the good fight for rare.  We should not see each other as threats, but assets to conquering a world we are already exhausted fighting for.  My vision is to see groups working together for the same mission, TREATMENTS FOR OUR LOVED ONES.  I hear this a lot, we are all in this together.. so if we are, let's work together and build each other up and not compete for it. Oh, and if you are expecting me to go into detail about the circumstances that led me to this post, well you will never know, because it just adds to the chaos and it's none of anyone's business.  Celebrate the victories and cry in the heartaches together. I think sometimes it's a good practice to stop and do a "heart check".  Where is your heart? Why are you doing what you are doing?   

Why I do What I do?

I have had several people question my motive and I am not really sure why.  I would think that it is natural to fight for your child to have the very best.  But amazingly, people still question my motives. No, I don't worry too much about those people because this is my calling.  I don't want a brownie button for doing something that I think any caring mother would do for her child.  I do however, find it a challenge when people tell me I can't accomplish what I intend to do.  Do not ever tell me I can't do something.  I will show you I can.  Many don't know what I did to continue the fight for my son.  It was very difficult to walk away from a 23 year teaching career, salary, benefits and retirement.  I have been told that was my choice to do so.  My questions to them. What stopped you from risking everything to help someone you loved?  Would you risk it all?  What stopped you from stepping out on faith to do the unthinkable?  I typically get the response of, "I don't have the resources or support to do that".  
Who said I did? If it's not there, you create it! Bottomline!  You have no resources? EXCUSE!  There is a big wide world out there at your disposal.  Use it for good and you will succeed. Don't EVER expect it to come to you, IT WON'T!  YOU GO GET IT! 

Yes, there are sacrifices.  I have paid many and still am, because I believe the cause I am fighting for.  I am just surprised that I still get judged for it too.  So my question would be... What would you give to make your child have the best quality of life?  For me the answer was simple.  I am doing what I need and will succeed.  I have sacrificed more than people know.  There are only a few who know my business and it's been difficult and excruciating at times to plow through.  But I stay the course. This is for my son, Beckett. I will not let people keep me from success of finding a treatment for him and others like him.  Know and understand that I will keep going.  People will judge, say no, have the wrong perception of and just flat out right not respect me and that doesn't matter. The right people will see me and my true motive and will get me to where I need to be to get my son and the others like him the help they need.  

After you read this...do a heart check... Why are you in it? Make friends, not enemies.