Mary Caruso » friendship

gaining momentum but learning all the way!

Mary — Thu, 21 Jan 2010 19:46:56 +0000

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

Giving Thanks to those around us!

Mary — Thu, 26 Nov 2009 05:00:55 +0000

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! :-)

Know when to “TAKE THE LANE”

Mary — Tue, 21 Apr 2009 11:43:24 +0000

Tom & Amy behind me on the right

Amy and her husband Tom were very inspirational to me on the bike ride! She is funny and kind and soooooo intelligent! He is funny and kind and soooooo intelligent! Hmmmmmmm there is a theme going on there. Yes that is right! They are a wonderful couple who are facing Friedreich’s Ataxia together! They finish each other’s sentences and know when to have fun, they would razz each other with the best of them but you just simply got this strong sense of camaraderie from them, you know when a couple just “gets it”! They understand what true commitment means. It’s not HOW much time you spend together it is the fact that whether or not you are together you are always on the same page. I loved being around them as did everyone else on the ride! People like that just pull you in with their wisdom and genuine kindness.

Well, one of the phrases that Amy and Tom used on more than one occasion was “TAKE THE LANE”. What that meant on the ride according to Tom was that if you felt any insecurity or unmitigated FEAR out there on the road you were to yell……TAKE THE LANE.

getting ready to "Take the Lane"

Then everyone around you would take up the whole lane of the road. This was our “RIGHT” Amy said and that way we would slow the traffic. NOW mind you, I was always the last person in the pack. So all of a sudden I would visualize the first car would of course run me over before they would realize that there was a whole pack of riders:-)! But the sacrifice would be worth it for my new found friends! I never had the misfortune of being run over but taking the lane certainly had a great effect and it worked!

So now I am home and things start to take on new meaning! Some of the stuff I discovered in that amazing ride now gets turned into my ordinary everyday life struggles. So, I realize that Take the lane also means that I can yell it out to myself when the going gets rough. Now some are saying HOLY COW! She must be muttering that phrase about a million times a day. BUT I am not! I am using the phrase very sparingly and of course only when needed!

carrying sam & aly with me always through life! There really is no other way to get by without learning to "Take the lane" in life!

But what I do realize on weeks like this one is that the phrase works so well in everyday life! You know, we all face everyday life struggles……life, death, arguments with friends, illness, ignorance……the list goes on. So this week I did it……I yelled to myself to TAKE THE LANE! What that meant to me was I was going to muster up all my inner strength, I would realize that some things can not be changed and just have to be dealt with! That is the beauty of understanding the true meaning of perseverance. So what I can not change this week, I will accept and what I accept this week will be because of my ability to “TAKE THE LANE! So this one’s for everyone out there that has had a bad week, or a terrible week or even a horrendous week! TAKE THE LANE with me and feel some empowerment. If you feel like you are a bit afraid or uneasy, know you can pull from your inner strength and TAKE THAT LANE………..face your fears, overcome them and deal with life’s tragedy’s head on! Tom and Amy will be proud. And so will I

In Peace and Love

Always,

Mary

The Cake eaters & Tickling Leo-Two great movies by two incredible people!

Mary — Fri, 13 Mar 2009 01:18:37 +0000

I have to interupt my daily training schedule for this important post!

Mary Stuart, Aaron Stanford, Jesse Scolaro, Sam & Ally at Cake Eaters Party

Most of the time it’s just good practice to have an open heart and be willing to reach out to help anyone who asks. But sometimes you reach to help and it’s PAY DIRT! A few years back I was asked if we would consider helping a director with a small movie that was being done in New York. They needed help understanding what life was like living it with Friedreich’s Ataxia. There would be a character in the movie with Friedreich’s ataxia and the director was very sensitive to portray the disease correctly. I thought this was great! First that someone would actually pick Friedreich’s (what a great way to get many messages across) and that a director would be that kind of a person to care about portraying it correctly! It was probably a young person from NYU or somewhere like that. I, of course asked the girls and they were also quick to say “no problem- we can help” so onward we went.

Jeremy Davidson and Ally at our annual fundraiser

I think pretty much everyone knows the rest. The director ended up not being a young college student but non other than the very notable Mary Stuart Masterson! The journey began and really hasn’t ended. We went to NYC and interviewed with them. Yes, the questions were sensitive and personal but the results were tremendous. I say that because we had the chance to meet people who are so dedicated to film and telling stories that are meaningful and passionate! One would think that it would all end there! But they didn’t use us and dump us, we went to see some filming of the movie, met more great people and developed friendships that will stay with us forever. Mary Stuart and her husband Jeremy Davidson as well as Aaron Stanford have been dedicated FARA supporters since that first day we all met. Aaron is a great actor who plays opposite Kristen Stuart in the Cake Eaters. Kristen does an unbelievable job with the part of a young girl with Friedreich’s Ataxia and Aaron represents hope to me. His character is quriky but real. Aaron has also continued to support us so much in friendship we are truly grateful to know him! The movie is filled with emotion and realism and puts a face on the human side of the disease.

Aaron and Sam at a Sandy Lane's fundraiser in California

It is premiering at the Avon Theater in Stamford, CT on Thursday March 19th -7:00pm…probably just about when I will be riding into Seattle. Please think about going to see this movie! It is great and you will see that Mary Stuart Masterson is not just a great actor but is able to direct with the same energy putting so much thought and emotion into her film.

www.thecakeeaters.com

So when you have one extremely talented person of course they end up marrying another extremely talented person!

Jeremy Davidson and Mary Stuart had to be destined for each other in this life. They are two peas in a pod-kind, caring, filled with integrity and dignity! Jeremy just finished directing his movie called Tickling Leo. I don’t know of a premiere date yet but you have to go to the website to watch the trailer. I know I can’t wait to see it! You can view the info at

www.ticklingleothemovie.net.

Once again a movie filled with passion and emotion, a story worth telling!

We will never forget that day when we first met! We cherish the fact that we stay in touch to this day. We are grateful for the opportunity and it is a reminder to me everyday that opening your heart can actually change your life……almost always for the better !

Thanks for seeing these worthwhile movies and making a positive contribution to the arts!

The gang at the filming of the Cake Eaters

Well …..Back to my bike, two days left till I head to Portland :-0!

In Peace & Love,

Meir

Slow and Steady wins the race!

Mary — Wed, 11 Feb 2009 13:03:10 +0000

“Life is not what society trains us to think it is. It is so much more. The diagnosis of our children with FA is not something we want, but something that steers us into the direction of finding in life what others may never understand. “

As quoted by my Connecticut friends- Tom & Caroline Hopkins – parents of a young daughter with Friedreich’s

So many people will never understand the true meaning of these words. You don’t necessarily have to have your life challenged to know what the words mean. There are some who naturally get the “true meaning of life” but there are others who will never get it. I try to use this example when I push the girls to enjoy life and be grateful for what we do have. Because of this understanding we live with extreme compassion (sometimes way too much for those around us) and with that compassion comes the will to fight, to survive; if you will.

I had the pleasure of working in the FARA office last week with Jen and Felicia and the great new person, Lynn! It was encouraging to see how big FARA really has grown while still keeping the big heart that we have always given it. I feel that this is the one thing that has kept us above the rest! This is a group of people with diverse backgrounds (heavy hitters as they say) but who are all extremely kind, compassionate, accepting and with an undying desire to work with everyone! How proud I am to be part of this incredible group of people! I’m actually not sure how I really got here!

Boy! Those girls can pile on the work!

jen-always busy working for that cure!

The important part of the growth besides the obvious push for a treatment is the awareness that has been brought about. I can not tell you how lonely it was in 1995 when there was nothing……the isolation was almost unbearable, the unknown scary. We are not quite where we should be as a society. But with our open hearts I am optimistic that one day we will as a society treat all people with dignity and respect. How easy it is to judge someone on their looks rather than take the time to listen, be patient and really see what is inside someone to see their true beauty! AND… the more we try to overcome the prejudice the better we become as people.

: felica and lynn hard at work!

Besides working in the office I spent some great down time with both Felicia and with Jen and Alan and their beautiful sons, Garrett and Luke. It was such a pleasure to be part of these kind and loving families. It gives me such insight as to why the mechanics of FARA work so well. Obviously people who are so content and happy on the inside just can’t help but bring that joy outward. Their homes are true testament to the generosity they exude. I was made to feel comfortable and felt so much at home with both families. I was even able to feel comfortable as I joked with Alan and his obvious compulsive behavior with frosting on a toaster strudel.

Who does this? only Alan!

But really, a wonderful experience and I feel like I did something worthwhile with my time by helping out with the clerical stuff. I am also proud to know that these people have touched our lives and continue to do so everyday.

famiy roots begin when two people fall in love.

to be this happy in the morning says something

I also had the exciting adventure of a life time as Felicia scouted out the bike shop that Holly had set up in advance to help with the purchase of “THE BIKE”! It is presently locked to my ankle-a little hard to get around the house like this but I will get used to it-! We got lost at every turn, backed into busy streets and laughed so hard we cried. We got to the bike shop with two minutes to spear- but low and behold! We got the bike! It sat at Jens for the week and then once again my dear friend Felicia delivered it to me in Connecticut. Now I just wish she could also ride it from Portland to Seattle in March. hmmmmm i wonder if I could somehow arrange that?

Be sure to take the time to get to know your friends a little better today. You will be the better person for it!

And maybe develop a bit more passion for life by stepping into someone else’s shoes………

A big day and a fun adventure !

In Love and Peace

Mary

it’s just another day :-)

Mary — Fri, 16 Jan 2009 04:48:02 +0000

Life is like a sunny day at the beach!

How easily we get comfortable with our lives. I don’t know about anyone else but I am always running on high speed, it’s just the way I am. So two weeks ago, AFTER getting over the bike theft and losing my ipod while doing a three mile training walk, I was commissioned by the girls to run out and pick up some food for them. Our good friend Erica was hanging out at the house and they were all suddenly very hungry. I was snacking on the best clementine when I ran out the back door. As my foot hit the ramp all these memories came to me of the previous two years when I slipped on the black ice that always forms on that ramp! But I hardly got to think much longer than a second when BAMMMMMM down like a ton of bricks. For that one split second as I was going down, I thought………..Jeeze I hate to let this clementine go, but how will I land with this clementine in my hand……..and actually I really didn’t have much of a choice to hold onto it as I hit that ramp with a vengeance. After I looked around to be sure no one witnessed such a stupid clumsy act I took a minute and waited for the girls to come to my rescue, then another minute and then….OH what the heck they aren’t coming………..so I gathered myself up and stumbled back in the house to find out why no one came out. The noise was loud and my gasp was louder! As I walked through the door very disheveled the girls all sat there at the computer completely unimpressed. I guess they had faith that I would find my way back in!

Anyway……as always there is a lesson here. Although I spent the weekend icing and with my arm in a big bulky splint I can honestly say it pulled me back into a great realization. A humiliation if you will, for these times are so important to reflect on your life. Even for me, someone who lives with two girls who are constantly challenged with physical limitations! When my arm was in a temporary cast I couldn’t write, eat, grab a glass, cut my food or even blow my nose very easily. I was able to do these things but it was a challenge. I really believe that more of us should experience these temporary bouts of challenge. Not to say everyone should go out there and take a serious fall but maybe if we all tried to at least reflect on what it is like to live outside our perfect worlds once a week it would give us more insight to appreciate what each of us has. And have patience and understanding for those who are not so lucky. I know this experience taught me to appreciate how easily simple tasks are for me.

SUNBURN!

sam's sixth ice cream cone!

one of the more tender moments of the trip!

We are now in sunny Florida! Thanks to some of our loving relatives and great friends we headed down to warm and ice free weather so the girls could move about and enjoy some outdoor freedom. It has been just so great! We have been relaxing and really not doing anything specific. Just enjoying life with good friends and appreciating the fact that we are here. I had hoped to get in some serious bike riding but the old hand isn’t quite up to it yet. That hasn’t kept me off the stationary bike however and I am working my way up to two hours a day on the stationary bike while keeping my balance with a bad bulky hand!

Quick update on the bike theft! The police feel it’s a done deal; we will probably never see that bike again. However, the rescue efforts from so many have been overwhelming and Jack and Laura have forgiven me (not that they were mad to begin with). It is overwhelming to find how many wonderful friends and kind and caring people I have in my life…..I am blessed for sure! I have a bike from Lauren’s son (he’s grown out of it!) and when I get back it will be tuned up and ready for riding. Don’t worry! It is presently inside my house-out of harms way. My kind and generous friend and dedicated scientist Rob has sent me a bike lock which I will use to lock the bike at night to my ankle! Thank you one and all for your kind offerings and constant encouragement which helps me to look at life though my rose colored glasses!

Stay warm and remember kindness keeps your heart open!

With Love and Peace Always

peace out!

Mary