Mary Caruso

This was a pretty amazing weekend, I must say.  This post could be about a hundred pages long but I will try to cut it back to some reasonable length.  It started with the dinner I made for some amazing people but first I have to talk about the “project”.

Although it is pretty overwhelming last weekend  proved to bring more people on board and even more kindness to us (as if that were possible .  On Sunday morning we were invited to the Congregational Church for the confirmation class ceremony.

The group of young adults had done some fundraising for the project as their missionary work and they  presented us with a check.  As I keep saying, the money is unbelievable but the actions of the people around us is priceless.  This group of high school kids really put themselves out there to raise funds.  They walked door to door to collect money from the community and by listening to each of them talk about the experience, you could tell they gained a lot.  I was able to thank them and express to them how much it meant to us that they they felt compelled to work hard for the girls.  They felt the value in the bringing comfort and joy to them and in doing so they took one small step for awareness and the value of each person.  It was heartwarming to be part of the ceremony.  From there Sam and I ran to the brunch at Lombardi’s in Northford.  The room was full of our friends and people in the community.  Megan and her husband and staff worked so hard to make this wonderful brunch a great success.  Again, all I can say is that is overwhelming to see so much support in the community.  As the foundation is finishing up and so many are still supporting this project in a big way it brings a lot of  emotion to us.  Not sure why or what we could have done to deserve so much kindness…..

But before all this excitement on Sunday I have to talk about the dinner that was purchased at our auction.

In September I again hosted a fundraising event for The Friedreich’s Ataxia Research Alliance.  It was the usual “Big Fish” event for me personally as so many kind and heartwarming people came forward to support us in our search for a “cure”!  During this years even there were a few new people along with the die hards.  Two of the usual die hards happen to be Craig and Maribeth.  They are soooo good to the girls and me, I have a hard time thinking about it.  I met Craig years ago when he was a med student at Yale.  Time slipped away but as life usually has it the circle came around and he and Maribeth came back into our lives.  We are very VERY lucky for this.  He brings a group along with him each year to the fundraiser and they really make the event.  They are all a riot!  Well, once again this  year the group won my annual dinner for ten people in their home!  The dinner was this past Saturday night and I must say it was quite the experience, one I will surely never forget.

I cooked and baked for two solid days, not wanting to disappoint everyone, I kept adding to the menu.  

I must admit, I love to bake and cook and to do it for such wonderful people was an honor!  I couldn’t wait to serve the food and hear the comments from the group.  Along with the joy of serving this dinner was the joy of working it with some of the best friends a person could ask for.  It was the “fun” bunch. Suzy and Fred, Allison and even Felicia came down from the big FARA headquarters to help out.  Sam and Alex were invited guests so got to sit at the beautiful table that Jean set.  Her home is warm and beautiful!

What was amazing to me was that even though this was a group of very accomplished men and women, you would never had known it.  There was not a stuffy person in the room.  The group of 10 (12 with Ally and Sam) were funny and warm, kind and generous and well just plain old regular people.  It was pretty obvious that these people really knew how to treat all people with dignity.  The girls sat at the table with them all and were engaged in most of the conversation.  Without even thinking about it, the group would cut food for Sam and Aly, pick up the occasional piece of food that flew across the room, fix a foot that fell off of the wheelchair pedal, hand a glass of water to them. it was second nature to this group of incredible people.  The amazing thing is that the appearance of these obvious actions (eating differently or the inability to hold a glass of water) are looked upon by many as odd or different when in reality it is just what it is, an outward appearance not having anything to do with the person inside.  So maybe it is because Jean and her husband live with the same obstacles so they have educated their friends?  Or maybe Jean and Jack are such genuine people they attract the same warm and wonderful friends?  I think that may be it!   Jean and Jack have a son with adrenoleukodystrophy (ALD) disease.  He lives with even more obstacles than Sam and Alex do.  Outwardly their son Brian has so many hurdles to overcome to reach each of us.  BUT if you take the time and put in the effort you can see the beautiful spirit inside this young man.  You can see his reaction to Sam’s annoying sense of humor.  You could feel his compassion as I spoke to him about a quieter dinner one night with the girls.  We saw his beautiful art work and the sensitivity his his eyes. The problem is most people can’t or don’t want to open their hearts to see the person inside.  What a loss for people like that!

So do I appreciate the amount of money this group of people donated to research?  ABSOLUTELY!  I can not thank them enough.  But am I grateful for the experience of being so warmly welcomed into the home of this family?  Do I feel honored to know each and every one of them?  You bet!  Am I humbled by their sensitivity and ability to look beyond a disability?  Yes!  More than anyone could ever know.  I am now a better person for having been at their dinner.

So I will leave you with a photo essay of some pretty amazing people, who as the day of Thanks approaches I can honestly tell you that I am thankful for each and everyone of them.  For as a group and individually they all make the world a much kinder and gentler place.  Enjoy this holiday week and embrace each person as a human being.  Remember that each of us has a value and deserves dignity and respect.

Allison & felicia prepping!

With Peace and Love!

suzy did a LOT of dishes...

Always

Mary

A man in the kitchen?  Yes and a very capable man !  Thanks Fred!

These guys know how to have fun !

Good Food, GREAT people and WONDERFUL FRIENDS!

Now that is something to give thanks to!  :-)

This was a big weekend for us.  Last year we attended the first Friedreich’s ataxia symposium put on by CHOP and this year proved to be even better.  Last year was the first exposure the girls had to any type of conference and they really enjoyed it!  This year they started looking forward to it about a month in advance.  With all the other exciting energy going on at our “house project” this was just icing on the cake.

By midweek the footings were poured for the addition and there was tons of activity. The girls found their way home twice to revel in the kindness and generosity of everyone in the community.  It is just so overwhelming that getting away wasn’t a bad idea anyway.  You know, timing is everything!

Friday morning we headed out!  Mary, Ally’s friend accompanied us so the four of us headed for the train station.  As luck would have it we bumped into Sarah and Couch Pont at the station so we enjoyed the ride to Philly with them! The trip really was so much more positive than negative.  The usual bumps in the road happened, we never let that get us down.  I guess the only really aggrivating episode was when people outside the Philadelphia train station started yelling and beeping their horns because it took us too long to get the wheelchairs into the taxi’s!  Can you even imagine????  Sad so very sad!  But we overcame that initial shock and just moved along in our journey knowing that it would all be worth it.  And worth it, it was!

We got to the hotel and immediately started seeing our friends and “family”.  It is so empowering to all get together, gather our information and gain the strength we need to carry on in the war against Friedreich’s ataxia.  There were all ages there and the girls really had fun meeting everyone.  We all gathered at a reception on Friday evening and had some cool demonstrations.  We saw ballroom dancing for people in wheelchairs.  It was cool and so great to see the possibilities out there.

Saturday was just as great.  A lot of information packed into one day but people seemed to manage it all.  All the speakers were great but there was one speaker in particular that just was mind boggling!

The speaker was Rick Guidotti from Positive Exposure.

He is a photographer with a conscience !  An artist with a mission and a human being like no other!

For the first time in my life I actually asked someone else why they were so happy.  People ask me that all the time.  Kind of dumb to ask that question right?  I mean can you really be too happy?  I don’t think so.  He was infectious. His energy just attacked you and you immediately sucked it all in.

Rick and Ally- two super human beings

He did a presentation on his work all over the world.  He focused on his work on Albinism, it is truly inspiring.  He strives to show the beauty in difference and the organization is dedicated to teach the world about the spirit of difference.  What a great way to instill the importance of kindness, dignity and respect!  I wonder if he bakes cookies also ? He strives to teach people how to see people first and foremost as human beings.  Hmmmm, he is right up my alley.  Please go to his web page http://www.positiveexposure.org.  You will be glad you did!

Rick photographing Sam

All in all this was a great weekend and has empowered the girls even more.  We are now in our individual spots for the week.  I find comfort in knowing they have both done tons of homework and are ready to start the week with their usual optimism.  I am ready for the week ahead knowing that CHOP and FARA have educated and empowered another group of great people and here at home I am surrounded by our community working like crazy to make our home and our hearts warm.  We so appreciate all of those wonderful friends that we are lucky to have. So I close as usual-counting my blessings!

In Peace and Love

Always

Mary

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

 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