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.