Monday, June 5, 2017

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 a heart check... Why are you in it? Make friends, not enemies.  

Wednesday, February 8, 2017

My Special Boy: I Just Want to Run Away Sometimes

My Special Boy: I Just Want to Run Away Sometimes: I haven't blogged in awhile and thought maybe I should go back to putting my feelings and emotions on paper. (or digital paper) It hel...

I Just Want to Run Away Sometimes

I haven't blogged in awhile and thought maybe I should go back to putting my feelings and emotions on paper. (or digital paper) It helps me process what I am feeling. Some days you are just numb to everything. I was told recently in a counseling session.. yes, counseling.. (I think everyone has been there...if not it might do you some good) 😜 I was told I am grieving for the child that I didn't have. I'll be honest, I thought she was all wrong, yet in some ways she was right. I am grieving a lot of things. I had to process a lot and had plenty time to do it these past weeks. I'm still not ready to accept somethings and I think that's OK because it's going to take me a while to figure it out.

It's accepting that your life is not the normal one everyone else has and is even harder. Today has been a hard day for me.. Wanting to run away and never come back. That's really bad ugh? Anxiety and worry tend to take over and sometimes it's hard just to deal with. Most people tell you don't compare your life with the cookie cutter American Family you see on TV. Right? That's what you are conditioned to believe your whole life. The perfect life right? House, car, dog (I hate cats; sorry cat lovers) kids and the whole shebang!

You see, everyone else's life on social media show the house (that's not child proofed with all the fortress locks, chains and alarms) the two kids, a dog, a pool, vacations, nice cars, blah, blah, blah! Kinda magnifies the problem and confirms the diagnosis of Facebook Blues. Our life is not anything like that. The medications that are given constantly, watching for the seizures to return and waiting for that next nuclear meltdown. Planning something spontaneous is never even considered! All that is gone. I miss that! I have to be brutally honest here and say I wish I could have all that back, but the guilt consumes me to almost a depression and I get angry. Then you pop right back up to then be reminded of how thankful you should be for what you have. Which I am, but then I am not. Yes, others have it much worse than I. I get that. But the feelings are still the same.

These feelings have an affect on every single aspect of your life. I now see why most all marriages of special needs end in divorce. In fact, 70% of all marriages with special needs end in divorce. Well, I guess I'm batting a 1000 because this is my second marriage, add in three kids from the former marriage, plus a child with special needs is a recipe for just that. I can see how relationships get lost in the frantic of everyday. A divorce is the only way to get a break from it all. I can honestly say, I will never marry again. No offense to my current husband, but that's the honest truth. Now, I am not saying I am divorcing, so don't go and think that. I am just merely sharing facts about relationships and raising a child with special needs.

I bury myself in my work to make myself feel better. It does. I don't want to stop and don't think I ever will. I was told I am addicted to my job. No, I just love what I do to help other people and that's the long and short of it. Sometimes I just feel like I am running on empty and search to be filled. Crazy? Right? My work seems to give me relief somehow, yet I am still sad as I feel like I am missing something.

Of course, I have people tell me all the time God put you here. Yes, not arguing that point, I believe He called me to this. I know some reading this, (especially the ones who know me from way back when) are cringing. Why you say? Because my life experiences molded me to be the person I am today. Which I am much more "relaxed" than the "rigid" expectations I was raised with. See, I was brought up in a strict Southern Baptist home. My Biblical core values haven't changed, but some of my thought processes have on "fundamentals of religion". But, you find yourself asking all these same questions, looking for answers that may never come. The questions of all questions; like "Why me?" and "Why do people cross your path and what was their purpose for being in your life?"

Funny how the self talk that most people have with themselves are what most of us ask daily without even thinking about it. So, I got to thinking and found this article on grieving a child with special needs. It fits me. I guess my counselor was right. I know tomorrow will be a better day and I will probably still ask the same questions tomorrow. I've had to learn to step back and sometimes take it at a minute at a time just to survive.