Mary Caruso

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

loving supportive grandmother

Happy Mother’s Day to all mom’s

always showing her affection

This is the last of the firsts for me.  That may not make sense to some, but to anyone who has had a significant loss will understand that following the loss of that person means facing each first occasion without them.  Subsequent occasions don’t necessarily mean that you bounce back to normal but the firsts are just so empty.  Funny that the last of my firsts without my mom would be Mother’s Day.  I have been dreading this for two weeks now.  I have sat in front of this computer all week ready to write something but have not been able to.  I guess it’s fear, fear of facing the day without her.  People have said to me that I have my children but it is different.  To me Mother’s Day was about honoring my mom!  I never really thought about the mom I am because I always had her, and BELIEVE me she is a mom to be honored.  

mom and dad-soulmates

So this morning I sat again in front of this screen and could not work up the courage to write anything.  What the heck could I be afraid of?  falling apart? breaking down and crying? I know, no matter what I would bounce back. I would bounce back because of what my mom has instilled in me.  That is why I have beena ble to endure all pains and obstacles.  It is the product of two wonderful parents!

I thought I might mention some of the beautiful memories I have of my mom.  One of the most enjoyable things I keep in my heart is just sitting there with her in the morning at a table.  Any table! It wouldn’t matter where.  It could be my house, her house, on vacation………she would sit with her crossword puzzle and her glasses on.  Cup of coffee in front of her, not saying a word.  She really hated to be interrupted in the morning when she was doing her crossword puzzles.  But the energy and the silence was so special.  She was so intent and had such a beautiful way about her.  But after that puzzle was done! Forget it! You could talk to her for hours.  It never mattered what the topic was.  She would listen and then give such kind, wise and insightful advice, she NEVER judged and I mean NEVER! Then the most fun times were each time I had delivered one of the girls (and she did the same for my sisters), my mom would pack up her car and head to my house.  It was so wonderful having her around.  The joke was she would also clean your stove! There was rumor that Micki had just one more kid to have that experience of a shiny stove !  Joking of course!  My love of baking came from my mom, I can’t tell you how many joyful hours were spent baking and cooking with her! Then when my life really got challenging my mom was there every step of the way for me.  She would give me just enough advice so that she kept me going without interfering.  That is a true talent! But she was able to always keep me on the right road….you know the road less traveled!

lunch with some of the PICU team at Yale.

So today, when my eyes opened at 5am.  I initially didn’t want to get out of bed!  But I thought about what I preach and I decided to Take my Lane!  I knew what I had to do to take it.  I had to face the fear and challenge myself.  To get motivated I ran two miles then I did some yoga!  That gave me enough energy to think about the day. Then I decided I would pay tribute to my mom by doing something kind.  I would bring lunch to the mom’s that work in the ICU at Yale.  Alex has spent time there, my mom was a nurse and my cousin Jackie is working there today. So here it is at 9:30 and I am good.  I made some food, I put brownies in the over and yes, I am missing my mom.  And I will cry today, I know it!  I will miss her terribly today because she is just so special to me!

 Please enjoy your day all you mom’s.  And kiss and hug your mom’s today all you people who are lucky enough to have them with you.  If you have lost your mom, spend the day thinking of them and remembering the good times!  Reach within and take on one of the best attributes your mom had and make it part of you! 

In Peace and Love

Always

Mary 

 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