Mary Caruso

Another year! Another group of AMAZING people and most importantly one more step closer to a treatment for Friedreich’s ataxia.  This year’s fundraiser was a bit more difficult considering the state of the economy. But as usual the people who donate still donated and the people who come still came!

And I have to take a minute to interupt this post, BECAUSE speaking of wonderful people and the real friends who never judge, who accept and love.  I was thanking the wait staff for their hard work and dedication to us on many levels and made the mistake of leaving out a very very important person in our lives.  Sandi Shelton (www.sandishelton.com) just passed it off as nothing when I never mentioned her name. There you have it!  A true friend! And you know what she really meant it, I know it!  She is kind and real, the kind of friend we should all have.  So SANDI!  Public apology…….you are the last person I should have left out!!

It is quite amazing to me how small the world really is.  Each year we get a few more people who so graciously give their time and money to us.  Each year those people seem to walk away with a little more insight, a little more compassion for their fellow human being and a whole lot closer to those who they met during the evening.  The reason I know all this is because I get the best phone calls and emails giving me support and guidance from the new people at the event and from the people who have been there every single year.  Isn’t it great that we can all continue to learn from each other and more importantly grow from our experiences together and become better people

I am blessed in that way because I learn so much from my girls.  I know I say it a lot but this year especially has been an enlightening year for me.  Having lost so much personally and having had to overcome so many stumbling blocks. I guess also for having had to fight  on behalf of the girls.  It would be easy to become bitter and angry during any life changing events, and believe me it would be very EASY to become arrogant and cold having to fight for simple rights that others enjoy every day.   But I do not, and the reason I do not is because each and every day I witness true strength through my girls.  I watch two totally different human beings struggling for the same rights and the same desires to be accepted by everyone.

Sam is so rough at times and Alex just keeps it all in.  Instead of fighting them I have learned to see them for their unique qualitites and build a respect for each of their personal traits.  Do I always love what they do or say? NO!  Do I always agree on their way of getting things done?  NO!  But I have learned to respect their views and accept their ways. This can be applied to each of us in our own personal lives and if we could all learn to accept and respect all people for their true value it would make the world better.   I have lived humiliation through the girls eyes and felt first hand the lonliness from being tossed aside.  Why do we do this?  Why do we judge so much? Why do we have this picture of what people SHOULD be like?

I was watching a show with Matty yesterday on a kid channel. There were these two teenagers trying to “dump” one of their friends.  They plotted to lose him by finding a “nerd” to pawn off on him.  WHAT THE HECK!  Well, they found this over weight kid with pimples on his face and bad hair and tape on his glasses and very awkward.  I watched in horror as Matty witnessed the boys friends so carelessly arranged the handoff at the expense of the “friend” and the “nerd”.  Luckily I was able to say a few choice words to Matthew like, gee that doesn’t seem nice, AND  they don’t know that boy, they are really making a bad judgement about who he is and gee that boy could be a best friend to one of them.  What was that teaching a very young audience?  Ok am I now being overly sensitive?  I don’t think so.  This resinates to our every day life. This does happen each day in society.  We have to stop and think about how we treat each other and how our kids witness how we treat each other.

STOP, get off the rat race train!!!! Use kind words, understand the other persons struggles, look for each person’s value- because every single person has a value!  LOOK FOR IT!  Just beacause someone may not look like society tells us they should…….LOOK past that!!! Feel compassion for each other and understanding!  Connecting keeps you young and alive. We can each connect every day by some doing simple things; smiling, laughing, crying, human touch, listening, looking someone in the eye…….the list goes on.

More importantly realize that no matter what age we are we can still keep learning and don’t discount the value in learning from someone much younger!  You see a new perspective and feel the joy in their passion! I continue to learn from the girls and the wonderful friends they have, being surrounded by a younger perspective keeps you alive!

If you can’t be open minded to these wonderful joys of life and breathe in the miracles that life has to offer… reevaluate your life.  If you can’t feel the humility of someone being chastised from society rethink your values.  If you can’t stop and aline your priorities, if you can’t be open enough to listen and live your life with passion and kindness, then you should just lay down; because my friend, you are already dead!  Don’t die out……choose to live your life in the most positive way you can!

In Peace and love

Always

Mary

There have been a few life lessons this week that have really hit home for me.  One of the important points to make is that although I am “ha-hum” considered older now, I can admit that I am still learning.  As I  go through a year of many transitions I find that the more relaxed I am and the more open minded I stay the more I learn!

The first interesting lesson was one that Sam and Ally experienced.  Obviously when it’s linked to your kids you immediately build jump start your defense mechanisms.  All you mom’s know that feeling!  Do NOT go after my kid!  Well that is the first mistake, I try to always take a few to absorb the immediate desire to defend.  For us life is “different” anyway.  Many of your kids out there that are in their late teens and early twenties have many altercations that you as parents are not even aware of.  That is how our young people develop social skills and coping skills along with any unpleasant experience.  But for the three of us as we are attached at the hip,  I happen to know just about everything in the girls lives (most of the time against their best wishes .  

SO- one of Sam’s personal care assistants happened to see the television show that we were part of from 2007 called Keeping Kids Healthy.  Her opinion of the show was not as positive as our opinion of the show. My feeling is that everyone is entitled to their opinion.  However, this person’s verbal remarks were somewhat offensive to Sam.  Her feeling was that the girls were portrayed as charity cases.  This snowballed into some pretty BIG drama.  You know, “he said she said”.   Through it all I turned into a sounding board.  When I first heard the comment I admit I was taken aback.  It is very hard not to take words like that personally. The show was a great learning experience for us.  We spent a lot of time with the crew, we were interviewed quite extensively throughout the process and then of course you’re done so you then let it go at the end because the result of a show is in the editing.  We felt and still feel positive about the show.  The girls both felt bad about the comments of this one person and worse about the drama which pulled in many people.  But in the end, the three of us have pretty much agreed.  I think I can speak for Sam and Alex feeling the same way that I do.  First of all, learn from ANY experience.  The big lesson is think before you speak!  Everyone is entitled to their opinion but you should most certainly consider the other person before you talk, especially if it is a direct hit on their life. THEN, spend some time thinking about how you  feel before you retaliate !  Sam and I have been going at this one since she was about two!!!! A lot of agony could have been averted if after the initial comment was made the girls had considered how they would move forward and then DROPPED it!  They were as responsible for the drama as anyone else.  Since they were both so insulted they had decided to let this person go as an employee.  Both Sam and Alex had this person work for them and both felt betrayed and belittled by the comment so that should have been the end of it. I think they both learned from this experience and hopefully have grown from it.  It is about acceptance isn’t it?  Life is easier when we accept each other.  Putting yourself out there is difficult.  The show was viewed by hundreds of thousands of people, the producers were incredible and gave the show (IN MY OPINION) heart, soul and honesty.  They won a New York Emmy for their efforts and these women both continue on in their work trying to make positive change in the world!  In all the comments we have received from the show-thousands- this has been the only remotely negative comment.  So let it go!  And finally they did!  Good job Sam and Ally!

The show link is in the box on the right!  http://www.keepingkidshealthy.org.  Click on the link that says watch this award winning show on Friedreich’s ataxia.  I would love to hear some comments on what you think of the show. Yes, even if it isn’t a positive comment-just keep it constructive !

The other really odd thing that happened  this week was on a very personal front for me.  Every morning I get up and run a mile.  It is one perfect mile down my street and back, and it is quite  a beautiful mile, I must add seeing the river, wild turkey, deer, birds etc.  The neighbors are the best, historic homes and just peace!  This week I ran down without seeing anyone, but on my return I could see a person in the distance and as I got closer I could tell that they were going pretty slow and then noticed that they were pretty much struggling with their mobility.  Then I saw the walking stick and knew that this person had some pretty incredible perseverance……….I began to slow down a bit so I could acknowlege this person and make some kind of connection.  As I approached, I could see it was a man who yes indeed could walk but with intense effort.  But as we confronted each other I no longer saw the struggle but what greeted me was the most incredible smile!  This guy was amazing……….you could see the spirit in his eyes and his smile was just embracing.  He said GOOD MORNING with his eyes and his heart and he made my day! Now, why did he make my day?  I asked myself this question the rest of my run?  Did I feel sorry for him? ABSOLUTELY NOT!  did I pity him? NO WAY!  He humbled me!  He gave me the fuel for the day.  As I came around the back of my house ready to end the run I looked to the left and saw Sam on the deck.  She was in this standing frame that we have.  It is the only way the girls can stand.  Jared straps them in this frame and then you can pump the seat up to a standing position!  They both get in the frame a couple times a week.

But she was standing and loving it!  She was throwing the ball to Rocky and I could hear her praising him, encouraging him and laughing!  She was enjoying standing there in the yard playing with her dog! Living life.  It is work!  It is work to stand for Sam, it is work to “walk” a mile if you can hardly walk at all!  I found myself crying as I ended the run.  Was I crying because I felt sorry for Sam and my new “friend”.  No, I was crying because of the diligence in both of them.  The desire to do better, to do what you have to do to succeed in life. What the heck do I ever have to complain about?  Nothing!  For them it is the simple things that WE (including myself) take for granted!  I see them both like everyone else in the world…..they just have to work harder and so deserve that much more respect!  

Charity cases?  I don’t think so……………………

In Peace and Love

Always

Mary