Mary Caruso

Help find a treatment for Friedreich’s Ataxia!

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.  get-attachment.aspxMegan 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.  PB190399

I must admit,PB190398 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.  PB210476The 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!

Allison & felicia prepping!

With Peace and Love!

suzy did a LOT of dishes...

suzy did a LOT of dishes...

Always

Mary

:-) PB210468A man in the kitchen?  Yes and a very capable man :-) !  Thanks Fred!

PB210458
PB210456These guys know how to have fun :-) !

PB210459PB210462PB210472

PB210464Good Food, GREAT people and WONDERFUL FRIENDS!

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

  1. Jeff Golanec
    8:12 am on November 26th, 2009

    Mary
    Thamks for sharing your experience with the dinner. You have a bunch of great friends who obviously care deeply about you and your family. Cant wait to see the finished product of the new addition. Have a great Thanksgiving.

    Jeff Golanec (NY)

  2. Juliann
    8:14 am on November 30th, 2009

    Mary,

    Thank you for sharing your heart and letting us catch a glimpse of your wonderful circle of friends. You are a blessing to FARA and those around you. You should expect the bidding for dinner next year to go through the roof!

  3. Suzy
    6:26 pm on December 13th, 2009

    As sick as I felt, I had a blast meeting such amazing (and funny) people! Thanx Mary, for letting me be a part of that dinner…the food was great (yes we had some after everyone was served LOL) you are amazing…I dont know how you coordinate it all! You’re the best!