Mary Caruso

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!

Most of everyone who reads my blog basically knows everything that goes on in our lives.  So the fact that the community of North Branford is once again stepping up and this time BIG TIME should be no surprise.  It all began a few years ago when Extreme makeover was coming to Connecticut.  Well, REALLY it all began in 1995 when Sam was diagnosed with Friedreich’s ataxia.  Funny when you think of it (although I try not to think of it often) but if things were different and my girls were living life without this horrible disease I would be living a boring but beautiful life!
I won’t go there though because there is just no point.  And after all we are living a beautiful life even with Friedreich’s ataxia.

But after Extreme passed on us people started grumbling and rumor had it that there would be an effort to step up and do it without Extreme.  I felt myself cringe!  Cringe only because it is so very hard to take from people never mind take something of this magnitude.  But then out of the blue Extreme was coming back.  This time there seemed to be a bigger push.  We even got an interview!  Although through it all I had a sense that we just were not exactly what Extreme looks for.  Remember it is still a television show with criteria and an obligation to their sponsors.  So I don’t take it personally and the family that received the makeover was certainly deserving.

So move on now a year after that and here comes Suzie  and Laura. There were people all over trying to do something each time there was a movement to go forward I would sweat a bit more.  Suzie wanted to start an organization and that she did.  Open your Heart, Help the Community was born!  The first project would be to do over our home.  Yes, it is crazy and yes it seems impossible and YES it is difficult to just sit here and take.  What is amazing however is the fact that despite the economy people from this small town are stopping at nothing.  They are generous above and beyond.  I wrote a letter to the editor when Extreme didn’t pick us the first time and expressed my heartfelt thanks for the support we get on a daily basis and now what will I do to properly thank all the people who are once again are standing by us?  How many cookies can you make to properly express thanks for the strength we get from our wonderful community?

Fran Merola is running around like a nut because so many people are contacting him, I am not even sure he knew what he was getting into.  The list is endless (there will be a banner) and the positive energy unbelievable.

We became close to our cousin Architect David Strong and his wife Mary.  Even if it all fell apart that bond would have been well worth it!  We are now connected for life both by the color purple and my parents butcher block table that sits in their beautiful home!  We are stronger and better people because of this project!

Without being too serious and grim I would like to try to give a personal overview on why this strength has been so very critical in giving us a positive life here in North Branford.  Two very close friends are going through absolute hell right now with their child who has friedreich’s.  I love these people like they are my family, in a certain respect they are my family just like all the other parents who share in the challenging life of friedreich’s ataxia.  I hear from them and I feel their pain, I feel their powerlessness and their agony.  I send them good thoughts, I pray, I call and I hurt for them.  But I can do nothing!  Just like the past 14 years as I watch in horror as my girls make their way through life.  I am here and I do what I can but there is only so much I can do and the rest I must surrender to and accept.  I must stay strong and hang onto my faith!  This is any parents nightmare and it doesn’t end!  But I am able to do it because of the people in my life……..the people in this town!

So enough of the reality.  It is a community of friends – really family!  It is the smiles and the cheers, the complements and the good wishes.  It is the shoulder to cry on and the hug to get us through.  It is everyone on this constant growing list to make this project a reality that keeps us going.  You give us strength, you give us hope, you show us what a strong and loving community is really all about!

Now how many cookies can I make in a lifetime to show the appropriate gratitude?  Not nearly enough!  But I will try, believe me I will!

In peace and love

Always

Mary

I promised that I would wait a day and absorb my thoughts about a recent set back personally.  I am not sure if it helped or not and I still have a giant lump in my stomach,  but at least I waited!

Late the other night I did my usual email check and was floored to get the following email:

Open your heart?

Rumor has it that the venue for your recent fundraiser did not have accessible rest rooms and all wheelchair users were in the back of the room where they could not see.  Why lump all the wheelchairs together? What’s the difference.   How humiliating!   Free venue or not – Hope it was worth it.  A little compassion is priceless.

I will be honest, it took the wind right out of me.  Of course I am overly sensitive to a fault.  I dwell on the mistakes I make-and I make a lot of mistakes.  I dwell on whether or not I make the right decisions and I am constantly over thinking almost every move I make.  But this was a direct hit on my very passion.  My passion to treat all people with dignity.  The email was signed but signed with first name only and the email address was not familiar to me.  So I guess since I don’t know who this person is, but they know me(or think they know me) I will address the issues here.

first, it appears they were not actually present at the event.  So wouldn’t a more questioning maybe a kinder email been appropriate?  The issue of the restrooms: my girls have used the rest rooms before.  I have learned that there is a difference between a newly renovated top of the line historic building that did not have accessibility and a historic building that do the best they can with the space and constraints they have.  The Owenego is just that.  They are not the best but are FAR FAR from the worst.

The issue of LUMPING the wheel chairs together were done with the utmost concern and I personally put all families (that I knew were coming) together in a place where all wheelchair users could get to the food and to the raffle room.  I felt that would be the priority for most.  Again, a decision I made alone feeling it was the most considerate decision.  Anything under 10 at a table doesn’t get a table at all.  We just are not a committee big enough to find seats for everyone.  There were many figuring out seating and many who could not see.  If someone had mentioned not seeing we would have been happy to move about for a dance number.  Other than that there was not much to see.  Someone asked me if in the future I could stand on a box, no one saw me!

The morning of the event we were faced with rain, wind and the unknown of whether it would get worse or better.  We ran and panicked trying to change the room around so people would not get wet!  We were all packed in that night but for the most part I think people came together with a common goal.

And the DIFFERENCE that email author asks?  The difference is that I can move more freely around the room as I wanted. The inside of each of us is the same (for the most part but I can not ignore that my girls don’t have the freedom to move around as easily in a large venue.  So in my persepective I “lumped” them near the food!

You just can’t get close enough to that Outback Steakhouse food as far as Sam is concerned!

So I apologize to EVERYONE if my decisions were preceived as uncompassionate or uncaring.  But I do wish the emailer had sent a more questioning and sensitive email. Or identified them self!  I can’t imagine they know me at all!

Please weigh in and let me know if I was off base.  I am open minded and am happy to look deeper within! I don’t mind the people who know me judging my actions.

Thanks very much for your input.  I look forward to it!

And by the way since it is my quote I will stand by it……a little compassion IS priceless!

In Peace, Compassion and Love

Always

Mary