Mary Caruso

I truly believe that certain people are sent into our life path for a reason. Now, you can poo poo that theory all you want but if you are the type of person to embrace life and live it with your eyes wide open you see things that most can not.   I joke and say that I am psychic but the truth of the matter is that one of the most valuable lessons I learned in art school was to really see things. Some consider that as being overly sensitive or “weak” but to me I wouldn’t live any other way.  To truly feel compassion and to be able to put yourself in others shoes is something I consider a blessing.

A few years back a friend of a friend of a friend had a friend who was looking for an apartment.  I just happened to have an apartment so I offered to show it to this friend once removed.  I showed it, he liked it, I rented it to him and the rest is history…….the journey begins with my celestial son!

I say celestial son because he has a wonderful family back home in California.  I am just borrowing him.  I have had the privilege of meeting Jacob’s mom, dad and brother.  All kind, considerate and very interesting…..JUST like Jacob.  I would never want to offend his real family so I use the term celestial son.  Celestial means from the heavens and I am sure that my dad sent Jacob to me that day knowing full well that we would be linked for life.

I have learned so much from Jacob……..the girls have had such fuller lives because of Jacob and this December won’t be any exception.

When Jacob came to me and said he wanted to do a fundraiser but wanted to do something different I was not at all surprised.  Very little of what Jacob does is typical, but that is what makes life interesting.  As he explained his idea I felt my stomach get a little queasy and by the time he finished I was about ready to vomit!  I admit I kind of begged him not to do it!

A men’s underwear contest?  A WET underwear contest?  At a very prominent gay bar? Oh my gosh!  I am certainly no prude but I just didn’t know……what would people think? he didn’t care!  how would this be accepted?  he didn’t care!  what would the comfort level be of most?  he didn’t care!!! then Jacob said to me.  I am naming it after your blog!  You are the one who is always pushing for acceptance and living your life with an open heart.  He also said that I am always advocating for treating all people with respect because so often the girls just don’t get that much respect.  I thought about it and really couldn’t discount anything he said…….BUT I was still a little queasy.

Then I took a trip to the York Street Cafe to meet the Joe the owner.  I was truly amazed that he really didn’t care to meet me or the girls.  He heard that Jacob wanted to do something to help the house project and that is all he needed to know.  He was the most humble and non judgemental man I have met in a long time.  He said it will be fun for everyone and he enjoys helping.  I asked what we could to to show gratitude and he really said he didn’t need any thank yous.  Completely unselfish and without needing recognition. A true human being in my book!

So the party takes shape and people start climbing on board and Jacob is really having fun with it.  I then start to notice that people from different backgrounds, different ages and beliefs are jumping in to help out and I am starting to see the diverse group that Jacob has attracted and I start to understand what he meant when he said it was right up my ally along side my blog. Now not everyone is that comfortable, but those who really care just don’t care about judging; they just wish it well and move on with it.

Before he left today he said to me…..”by the way, when WAS the last time you wrote in your blog?”  So here you go Jacob.  I am jumping in just like you did.  And I am acknowledging my appreciation to the wonderful person you are and facing my own idiosyncrasies with honesty. You embrace people and you accept people and you teach us that no matter what a person’s beliefs are or their sexual preferences are or whether or not they walk or roll or if they are black or white……we are all the same inside.  We all deserve to be treated with kindness, dignity and respect.  And it is a lot easier to  open our minds to something different than to spend negative energy  passing judgement!

Less judging and more acceptance. What a wonderful world this could be……………

In Peace and Love

Always

Mary

I find myself looking within every day and accessing the way I treat people and constantly striving to improve ways that I can become a better person.  I have been doing this for some years now but not my whole 53 years here on earth.  I wish (we are always wishing for something I had learned this tool years ago.  But that is why I move along this week with excitement as the “Wheelchair challenge” becomes a reality.

It has been said in this blog over and over again to the point where some may be quite sick of hearing it………..We need to become a more accepting society!  What better way to achieve this than to bring a valuable exercise to a whole student body.  AND did that student body step up or what?  For 196 people to sign up for this event shows a large percentage of the school accepting a challenge to open their minds and to celebrate difference.  I won’t say too much about what it is actually like maneuvering around JUST for the day in a wheelchair because that may take the fun out of hearing what other’s have to say about it.

I just know from my own experience that I watched as the years went by and I saw with my own eyes and my own hurt soul as people started to treat Sam and Alex differently as their outward physical appearance changed.  They stayed the same on the inside so why would this happen?  I would ask myself the question each night as I lay in bed, preparing for the next day of challenges. I was dedicated to staying strong for them and paving the way if I had to.  It was bad enough dealing with the reality of having a progressive disease.  I still wanted them to become strong, kind and productive people in society.  Really, what any parent wants for their children.

However, over and over I found that their peers disappeared, some teachers treated them differently even State agencies who were set in place to help would become adversarial.  Through it all they stayed “differently the same”.  I love them for what they have become!  They both move forward with grace – ok Alex is a bit more graceful than Sam !  But Sam has that sense of humor that kept her going through it all!  That sense of humor and ability to laugh is what I admire about her.  Alex has had to fight for so much and as quiet and insightful as she is she is making it all work.

So THANK you to Open Your Heart!  You are working like bees to raise money (with TONS of help from the community) to make the living environment so wonderful for us but what you are teaching in this event will help so many others in this world.  You will be empowering any person “of difference” and enlightening so many young people along the way.  You are helping me keep up the momentum to make this world a better place.  For that I will always be grateful.

And………THANK YOU to all who have signed up for  Open Your Hearts – See How We Roll!  I hope you are able to look inward and access life from  a different perspective.  You are on your way to becoming a more open minded and compassionate human being.  What a great step for mankind, a life lesson that you will always remember!

Can’t wait to see you all on Friday!

In Peace and Love

Always

Meir

Learning to all get along with along with all people  is such a great life lesson.  What better way to learn to get along than to work with a diverse group of people who come from quite an influential background.  I am lucky to say that I am privileged enough to be part of (well kind of part of) a group like this.  I am returning from a tiring two day board meeting in Philadelphia.  Yes, tiring but also invigorating because there was presentation after presentation about promising work being done and then there were hours of grueling “housekeeping” choirs that kept everyone up to date about how amazing the board worked together and how important it is to offer stewardship to others and how beneficial it has been for research, to build credibility and connect scientists, government and the patient community.  I look around and quite honestly feel like I am a cartoon character in a realistic motion picture. There are people around me that have extensive backgrounds in so many different fields.  I really can’t say much except that I am honored and very very grateful that the future of my girls lies in the hands of these amazing people.  
What’s more is that because of these people on the FARA board, the community of patients and their families has in ten years moved from being strangers and a world apart to becoming a close and tight knit family.  In 1995 when Sam was diagnosed I was told among other things that I would probably never meet anyone else with this disease (and that is a quote!) and I left to face this lonely world alone.  But how things can change and how a little faith can keep you afloat.  Today the patient “family” consists of hundreds YES hundreds of people so dedicated and so determined to FIGHT this disease!   What more can you say than the word GRATITUDE to so many people!

There is now so much hope and so many wonderful people doing fundraisers that are making a difference.  We support each other in

enjoying what life has to offer after all isn't that what all this work is for?

many ways, and doing fundraisers has proven to keep us “family” and stay ahead of the disease by forging so much research.

So, I leave exhausted but humbled, weepy but empowered and all because I sat with  a room full of extraordinary people.  I head home looking forward to optimistic days and knowing that I am very grateful that I have the ability to sign up for  Ride Ataxia in Tampa Florida on April 13^th and bring a gang full of my wonderful friends to Ride Ataxia in Philadelphia in October!  We can raise money and awareness and at the same time give Sam and Alex the knowledge that we love them and we are all pushing for a treatment for them and so many others.

I must end by adding a quote from the FARA mission statement…….

Acting along, there is very little any of us can accomplish.  Acting together, there is very little we will NOT accomplish!

Thank you FARA Board, families within the parent group and so many that support us all daily!!!!!

In Peace and Love

Always

Mary

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!  :-)