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!  :-)

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

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

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

my inspiration

my joy with my sorrow!

BUT there I go again away from the ride……so for all of you incredible people who have invested in me for this ride I can tell you that I have learned a TON!  I now know how to hold my wrists on the bike AND my arms.  How to position my head (not a normal position I promise) and even how to actually pedal correctly.  I know this because I was doing all of it WRONG!!!!  I had a great training session with Ron at Pedal Power in Middletown.  They are my new best friends.  It is a great little shop………now when I say little I don’t mean small.  The area is large, the selection of bikes huge, the knowledge of the staff unsurpassed! When I say small I mean it is intimate, friendly and embracing.  When I first walked in Paul met me within seconds……..huge smile and a very warm welcome.  He could probably see the terror in my eyes because he was very gentle in his approach.  It brought me home to how I would try to greet my customers when I had my shop.  He had the very hard task of fitting me to my bike helmet….NOT an easy task.  I think that my head is way too big for my body.  And those things are not the least bit stylish.  Someone has to do something about those things……my riding helmet back when I was a kid looked better.  And maybe my friends Holly and Kyle who ride can get by wearing them because they are unbelievably good looking but what about me?  UGGGGGG…it is NOT good!  So anyway Paul did fit me after a long time.  Each time we got closer to the right fit I would break out in a cold sweat!  remember I am VERY claustrophobic!  But you gotta do it!  So I sucked it up for safety sake! And we did it…..the final fit was perfect!  It took a few minutes for the sweat to stop and the room to stop spinning and my ability to breathe return!  I have gotten used to the helmet and now it’s only a few seconds after I put it on to get back my courage.  NOW! Combine that with clipping your feet into the pedals, putting on those important gloves, balancing on the stupid bike and EVEN…..GULP! riding down route 80 (from the library to my house)……….but I DID IT!!!!!!  So what does everyone think?  Too small of a step?  

The general concencious is…………I am in big trouble!  Last night there was a big surprise at my house when I got home.  A group of dear friends all traveled to be together to have a great dinner and celebrate friendship, love and kindness.  It was the perfect night!  My girls planned it……Ally & Sam & Laura & Janie pulled it off without a hitch and we had fun!  The only bad part is that EVERY other word was about the bike ride!  And it wasn’t all good!  There were some knowlegable riders present, my friend Mike is a big peddler from way back and he was pretty tough on me!  There is SO SO much to know and so much work involved.  Everyone agreed……..I am in big trouble!  

karen with the two bike experts-john & mike

PLEASE REMEMBER!  I never said I was well trained or experienced.  I am doing this for enlightenment and to become a better person.  I am doing this for those who can’t ride or even walk, I am doing this for those who have a hard time existing in life, I am doing this for the betterment mankind!  I want ALL people to know that you have to work hard in life, strive to exist and LOVE what you have not WANT what you don’t have!  So one way or another I will finish the ride.  Mike thinks it’s going to be sometime in June……John thinks I will do so well that I’ll keep going to Canada !  Either way the important lesson is……………I love both these guys for the different people that they are and the joy they bring into my life.  (John reads the blog…..Mike does not!) I embrace my life for the beautiful path is takes-my great kids, my wonderful friends and family, my incredible sisters, the forever memory of my mom and dad (they ride with me each time I get on the bike) ……………… and I am grateful for each and every day!

Hope I talked enough about the ride! I am working on my core strength and as of today I can ride 10 miles…..Mike wants me to do 15 THIS week!  UH OH!

Until then……..

In Love and Peace

Always,

Meir   

it's the people in your life that make the journey worth living. Missing are Darren & Jackie!

  I guess before I can really express my true convictions I have to write just a bit about how I became so resilient.  Especially this time of year, I believe we all look back upon our childhood with so many emotions.  I truly had the most amazing parents anyone can imagine.  

My dad was a business man who had a combined personality of intelligence, wit and compassion.  Even after his passing in 2001 I still have people coming up to me to tell me these wonderful stories about how he helped someone out when they were having difficult times.  He owned an oil company in my hometown of Rocky Hill.  He really was the pillar of the community involved in so many civic organizations.  He was so kind and generous.  We butted heads most of our lives but had a deep connection because we were so much alike.  I still remember the day he was so mad at me I thought his head was going to blow off.  But he never raised a hand to any of us instead he banged on the side of the house so hard I saw the shingles start to fall away!  AHHHH great memories.  My most precious memory is that of taking a trip alone with him in 1994.  I had never done such a thing and we had a blast.  We went to Florida together and I had the wonderful opportunity for the first time to see how much we really were alike.  We talked to everyone and made friends everywhere! Then when we found ourselves snowed in at Newark Airport we made people laugh-and I mean people who were pretty aggravated at the situation.  We were able to turn the mood around and laugh and joke with people in the airport.  I will always cherish that trip as one of the most valuable lessons in my life!

My mom on the other hand was a bit more quiet and reserved.  She was the apitamy of what a mom should be.  Beautiful in spirit and so humble.  Almost every day when I walked in from school her baking bowls and wooden spoons would be out and ready to bake some great new recipe.  She was the wisest woman and had the most insightful advice for many.  We lost her this past June and this season is turning out to be the most challenging for me so far in my life.  My sisters Marcia and Micki and I have still not moved her bathrobe from the hook in the bathroom, somehow it just doesn’t seem final until that is done. Mom had a heart of gold and was the most non judgemental person in the world-truly and genuinely!  She attracted people to her kitchen table her whole life-she was the best cook and was always such a delightful person to sit and talk to.  When I was a child I remember on May day she said to me, “let’s go pick all the may flowers in the back and we will bundle them and surprise people by leaving them at their front door”.  It was such an exciting adventure, and such a simple pleasure.  We had a ball running to our neighbors doors and leaving the anonymos beautifully wrapped bundles of flowers.  Thinking back it was the start of my desire to do acts of kindness and my mom introduced it to me at such a young age.

Together they worked as a team raising my sisters and me in the most wonderful home I could imagine. Marcia, Micki and I recently took time away from the busy season to sit and enjoy lunch together.  It was so wonderful!  We talked about how much our parents cherished family and vowed to see each other at least every other month.  I ask you this week to think about your roots, your parents!  The people who made you who you are today.  Let go of any of the bad stuff (cause there is always bad stuff with the good stuff) and really think about the good stuff. Whether they are here in body or in spirit hold on to that one great memory and place it in your heart!  If you have children try to talk to them about the good stuff that was brought to you and what you bring to them.  

Open your hearts today and enjoy.  May you find love and peace in this day. Oh yes and do something really kind, either to someone you know or maybe someone you come upon- YES even a stranger!  And even if it is just a smile and a hello.  Then comment on it- on how you felt to put yourself out there. Try it!

With Love and Peace & a Merry Christmas to all!

A Wonderful Christmas Day 08!

Always

 Mary