Mary Caruso

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