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.