Mary Caruso

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!  :-)

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

Well, I have started about 50 posts and each one went into the trash.  Why?  Well, because when I did my October post the news had spread quickly and the town was coming in from everywhere to start the project on our house.  It is is amazing how people are giving big time of their time, money and energy.  So…………how do you really write about that and express genuine heartfelt emotions?  That is the big question!!!! Everything I wrote just seemed so trivial in comparison to what is being given to us and done for us.  Then I started to think about it.  That is how people are misread.  One could look at my lack of writing as a disregard for what is being done.  I would never want that.  So I will write and this time I am not going to read over it.  I will not let my neurotic ways overcome the posting of this blog !

Wow! Garage......GONE!

There is so much excitement around the project.  When I say people are coming out of nowhere I am very serious!  There is a web page being developed, that should be up soon.  Now there is a facebook page so people who are brave enough to be on facebook can follow but soon anyone will be able to follow.  This week was a week filled with two incredible meetings.  The first was a meeting of people who wanted to be on the fundraising committee (ouch for those of you who know me……that one hurt!)

such great friends!

Alison.......I watched as she grew into this amazing, wonderful attorney!

But the room was filled and everyone was energized and it is so hard to understand why everyone is being so generous to us!  Then last night the web page meeting.  A group of a few people sat around a counter and thrashed out all the details-almost all of was foreign to me!  But as I sat kind of on the outside of the circle, I looked in and saw a group of incredibly generous and kind people working well into the night for us!  Anthony who doesn’t even know me-NEVER met the girls……..can you imagine? Two dear old friends………how important is that in this world? To know that Suzie and Ali have known me both since the girls were very young and still stay close?  Ali used to babysit for the girls when they were very young, then ended up working in the store!  Suzie who is the president of Open your Heart did the very first fundraiser for Sam when she was diagnosed in 95.  I’ll never forget it!  AND I sat at the counter of Fran and Tracy’s home where all the work was being done.  Tracy supported me in the store for years and purchased so many things as their daughter Taylor grew up into this beautiful young woman, she was all curled up on the sofa…..so cute!  I still remember the photo of Taylor in her beautiful communion dress!  I had so much gratitude for their support of the store and I just can’t express the gratitude now.  The best is I never sat at their counter before………such a simple pleasure that is a result of all this incredible work.   So the energy this week was enough to fill up the empire state building.

opening their hearts and their home!

I may never really be able to express the deep  feelings we have with my words in this blog but I will try anyway.  It is the least I can do.  The girls call daily and they can’t look enough at the plans.  David is here often and runs back and forth meeting people and getting all the drawings done.  There is a banner in the front that is filled with names of people pitching in, they are now working on banner number two and it’s also filling up FAST!

This is a daily reminder that life is good and we can overcome any obstacles as long as we have each other as human beings holding us up and filling us with courage and strength.  Friends who are real friends and a community that is strong in kindness and compassion…………..

Thank you everyone!  For the compassion and kindness that moves me through this journey.

In Peace and Love Always

Meir

UGGGGG……….still not sure  it’s good enough, but I won’t read it!