Mary Caruso

 Ok, So I have taken all these beautiful photos at work the past few weeks and have been so excited about actually working and being able to share my gratitude with everyone for being able to love my work, and appreciate my boss (and dear friend)  and just enjoy my clients and…….WHAM!  the carpet gets pulled out from under me when I get a phone call from one of the girls counselors from one of the state agencies that they deal with. Now I think I have kept all the posts positive.  AND I do not want to use this blog as a negative sounding board, I really try to live life in a positive way!  Do I?  I will defer to those around me to answer that question! Then maybe I should heed my mom’s word and not say anything if it isn’t good?  NOPE…….got to do it.

 I am so disappointed to find that when you deal with an agency because you fit the criteria, then you try really hard to work as a team, you know…. pull your weight!  Hold your own! Not expect just a handout! Treat others as you would like to be treated! Then you recieve blateant disrespect in return!  How do you hold your head up and hold on to that sense of dignity?

Well without naming any names………I am just have to tell  ”our side of the story”. Because there are always two sides.

Alex has been battling with an agency to be picked up as a client.  We started early because with Sam there were delays and when she started college all her services had not been done in a timely fashion so she started at a disadvantage.  It was a tough go, you know lots of crying and a high level of fear.  But I am proud to say that she made it through the tough times and she has done well.  So for Alex, we all decided to start a year early.  Things were really going well, she was diligent, hard working and always pleasant. Alex did very well in high school by senior year she was ready to take some courses at Southern so she could transition in to the college life with less stress.  She took a class each semester and excelled, she volunteered, got a schlorship…….the list goes on! As we worked with this agency I was my usual annoying happy and grateful person.  I was so happy to be working as a team, setting up what we thought would be the tools to help Alex phyiscally be on the same playing field as able bodied student so she could exceed her expectations  in college and she would move eventually into the workplace and be an integral part of society.  That is what I try to instill in both the girls and most know that this is not always easy in the general population BUT you would hope to get camaraderie, respect and advocacy in an agency that helps individuals with disabilities succeed!  As time went on Alex continued to do well and forge ahead, despite some hefty medical setbacks last year, she continued on to Southern and continued to do well. Unfortunately the biggest obstacle she has had to endure is that very agency that is put into place to help her succeed.  She has been met with nothing but indifference, ignorance and quite frankly finger pointing and the “blame game”.  I can not tell you how disappointing it is to see how these state and federally funded programs are mismanaged and abused.  Sometimes I know I am idealistic in my thinking but maybe that really is the simple answer.  Why can’t we all just sit at a table and be honest and cut the bull shit bureaucracy out?  And I know that this post is somewhat murky, I really don’t want to say too much-have I already?

So….since this post was to be about my job let me say this:

I do love my job!  I am very lucky to have a great boss, a beautiful environment to work in, wonderful clients! Wonderful!  They all keep me going in an optimistic way; Craig & Maribeth, Barbara, John & Pat, Jane and the list goes on ! I do have an army of loving friends who are there for me always!  I am grateful to have this blog to point out the incredible things in life that we should all be thankful for! AND I do apologize that I have gone on and on for this one,  but I have been up all night with a pit in my stomach because I have to once again say to Alex that this bureau did not listen to us two years ago and are still saying no to simple requests that will help her succeed.  And the saddest part is that I know in my heart that they are just throwing blocks in the road to make it just a little bit harder!  Instead of working together to create ways that could help to enhance Alex’s life it has become an adversarial relationship.  Sad, very sad.

I am writing a letter to President Obama.  

Have a great day and PLEASE be nice to people today.  Be honest and move forward with integrity today.  Being honest and open with dignity isn’t always the easiest but it is the best way to live your life!

In Peace and Love

Always

Meir

Tom & Amy behind me on the right

Amy  and her husband Tom were very inspirational to me on the bike ride!  She is funny and kind and soooooo intelligent! He is funny and kind and soooooo intelligent!  Hmmmmmmm there is a theme going on there.  Yes that is right!  They are a wonderful couple who are facing Friedreich’s Ataxia together!  They finish each other’s sentences and know when to have fun, they would razz each other with the best of them but you just simply got this strong sense of camaraderie from them, you know when a couple just “gets it”!  They understand what true commitment means.  It’s not HOW much time you spend together it is the fact that whether or not you are together you are always on the same page.  I loved being around them as did everyone else on the ride!  People like that just pull you in with their wisdom and genuine kindness. 

Well, one of the phrases that  Amy and Tom used on more than one occasion was “TAKE THE LANE”.  What that meant on the ride according to Tom was that if you felt any insecurity or unmitigated FEAR out there on the road you were to yell……TAKE THE LANE.  

getting ready to "Take the Lane"

Then everyone around you would take up the whole lane of the road.  This was our “RIGHT” Amy said and that way we would slow the traffic.  NOW mind you, I was always the last person in the pack. So all of a sudden I would visualize the first car would of course run me over before they would realize that there was a whole pack of riders:-)!  But the sacrifice would be worth it for my new found friends!  I never had the misfortune of being run over but taking the lane certainly had a great effect and it worked!

So now I am home and things start to take on new meaning!  Some of the stuff I discovered in that amazing ride now gets turned into my ordinary everyday life struggles.  So, I realize that Take the lane also means that I can yell it out to myself when the going gets rough.  Now some are saying HOLY COW!  She must be muttering that phrase about a million times a day.  BUT I am not!  I am using the phrase very sparingly and of course only when needed!

carrying sam & aly with me always through life! There really is no other way to get by without learning to "Take the lane" in life!

But what I do realize on weeks like this one is that the phrase works so well in everyday life!  You know, we all face everyday life struggles……life, death, arguments with friends, illness, ignorance……the list goes on.  So this week I did it……I yelled to myself to TAKE THE LANE!  What that meant to me was I was going to muster up all my inner strength, I would realize that some things can not be changed and just have to be dealt with! That is the beauty of understanding the true meaning of perseverance.  So what I can not change this week, I will accept and what I accept this week will be because of my ability to “TAKE THE LANE!  So this one’s for everyone out there that has had a bad week, or a terrible week or even a horrendous week!  TAKE THE LANE with me and feel some empowerment.  If you feel like you are a bit afraid or uneasy, know you can pull from your inner strength and TAKE THAT LANE………..face your fears, overcome them and deal with life’s tragedy’s head on! Tom and Amy will be proud.  And so will I

In Peace and Love

Always,

Mary

Alex Bode - May 13th 1990-mothers day! proud sister, proud grandmother

April 13, 1995 is a day I will never forget.  I don’t think of it with excitement or wonderful memories, but I do think of it every year.  It is the day that my life; as I had grown to love and enjoy, was over.  The day that Friedreich’s Ataxia came into my life…………..life was never the same again!

life as toddlers

growing up together enjoying life

That day will go down in history as a day of despair and horror.  Some of the experience I remember as if it were yesterday, and yet in my memory other specifics of the day are gone!  I try to remember little tidbits of the hours I spent at Yale with Jackie and try as I may………NOTHING!  One thing I’ll never forget is that the Doctor wrote out the words on a piece of paper F R I E D R E I C H ‘ S A T A X I A-PROGRESSIVE NEURODEGENERATIVE DISEASE.  Does anyone know why she did that?  I’d like to ask her one day.  Did she think that would be the only way I would truly accept such a diagnosis? Couldn’t be………  I also remember that they brought me grape juice to drink.  I was so upset I guess they felt I had to drink something.  Well, thanks for that………can’t touch the stuff now (and it’s so good for you too).   But I can’t remember how I reacted. Isn’t that odd?  I know that I cried……..I know I kept saying they couldn’t be right.  But I can’t actually remember the physical act of crying.  It really doesn’t matter, it’s just odd.  The whole day was surreal and when I finally got to leave a stranger reached out to me and helped me.  He has no idea!  I don’t know who he is and I never will.   I remember the walk to my car in the parking garage and how very very lonely I felt.  All these visuals going through my mind and thinking about how the girls and I had just spent the night before at Jerome Harrison’s family fun night.  We had a blast playing all these wonderful games with the other families in the gym.  It was over though……That whole life had ended.  We no longer belonged in the same life with “those” people. They would move forward in life and go on to a normal life filled with dating, marriage, weddings, grandchildren……etc……..I didn’t know how I was going to go on.  I got into my car and then I do remember crying, really crying!  I drove to the cashier  to pay and he just looked at me.  But the look was kind and very sincere.  He spoke so intently when he said, “listen, I have no idea what you are going through right now but you have to know that it will be ok.”

That one sentence from that man-a perfect stranger-helped me that day.  Now, I certainly did not pull myself back in shape and just breeze through life till now!  But something about the encounter gave me just that tiny bit of strength that got me through the drive home.  That was just what I needed in that small little second of time! Those simple kind words and look of compassion on his face!  It was like getting a heart from a stranger !

making it easy to give away hearts

family

  I WILL remember April 14th, 1995  every year as a practice though…..that day was the most humiliating day of my life and that humility has taught me to be kind, appreciative, compassionate and to be grateful for what I DO have.   So this day is for my beautiful girls and my wonderful friends and our A-MAZING doctors. I will not focus on negativity but on the positive side of life. Because as tough as it gets……AND IT GETS TOUGH sometimes.  These people in our lives have picked us up and carried us through the bumps in the road.  Never, in my wildest dreams did I think that life would be ok…..that the girls would persevere……that I could be so proud!  But I am.  Each time one of our friends back then would disappear because the going got too tough for them a new door would open and someone would seem to “step up to the plate” if you will.  So, as much as I say I honestly hate friedreich’s ataxia.  I can say that the path that Friedreich’s ataxia has brought us to has been a positive one.

never growing up!

So this day is a day for the world to know that we all have to stand tall together! It doesn’t matter what color we are, how we dress, how we talk, whether we walk or not, we are all human beings!   We must support each other with respect, kindness and compassion! Each of us has our own unique contribution that can help make the world a better place! Today is Sam and Alex day to me and each of you should make it your personal day paying tribute to someone in your life who overcomes obstacles yet laughs in the face of adversity!  And in their honor you need to spend  today with your eyes wide open and your hearts open even wider.  I will be handing out hearts today…………making the effort to connect with others and taking one more small step towards a kinder gentler world.  What will you do today to to make a difference in the world close to you? In the process, will you make yourself a better person?……………………

living life pretty well!

In Peace and Love

Always

Meir