A few years back a friend of a friend of a friend had a friend who was looking for an apartment.  I just happened to have an apartment so I offered to show it to this friend once removed.  I showed it, he liked it, I rented it to him and the rest is history…….the journey begins with my celestial son!

I say celestial son because he has a wonderful family back home in California.  I am just borrowing him.  I have had the privilege of meeting Jacob’s mom, dad and brother.  All kind, considerate and very interesting…..JUST like Jacob.  I would never want to offend his real family so I use the term celestial son.  Celestial means from the heavens and I am sure that my dad sent Jacob to me that day knowing full well that we would be linked for life.

I have learned so much from Jacob……..the girls have had such fuller lives because of Jacob and this December won’t be any exception.

When Jacob came to me and said he wanted to do a fundraiser but wanted to do something different I was not at all surprised.  Very little of what Jacob does is typical, but that is what makes life interesting.  As he explained his idea I felt my stomach get a little queasy and by the time he finished I was about ready to vomit!  I admit I kind of begged him not to do it!

A men’s underwear contest?  A WET underwear contest?  At a very prominent gay bar? Oh my gosh!  I am certainly no prude but I just didn’t know……what would people think? he didn’t care!  how would this be accepted?  he didn’t care!  what would the comfort level be of most?  he didn’t care!!! then Jacob said to me.  I am naming it after your blog!  You are the one who is always pushing for acceptance and living your life with an open heart.  He also said that I am always advocating for treating all people with respect because so often the girls just don’t get that much respect.  I thought about it and really couldn’t discount anything he said…….BUT I was still a little queasy.

Then I took a trip to the York Street Cafe to meet the Joe the owner.  I was truly amazed that he really didn’t care to meet me or the girls.  He heard that Jacob wanted to do something to help the house project and that is all he needed to know.  He was the most humble and non judgemental man I have met in a long time.  He said it will be fun for everyone and he enjoys helping.  I asked what we could to to show gratitude and he really said he didn’t need any thank yous.  Completely unselfish and without needing recognition. A true human being in my book!

So the party takes shape and people start climbing on board and Jacob is really having fun with it.  I then start to notice that people from different backgrounds, different ages and beliefs are jumping in to help out and I am starting to see the diverse group that Jacob has attracted and I start to understand what he meant when he said it was right up my ally along side my blog. Now not everyone is that comfortable, but those who really care just don’t care about judging; they just wish it well and move on with it.

Before he left today he said to me…..”by the way, when WAS the last time you wrote in your blog?”  So here you go Jacob.  I am jumping in just like you did.  And I am acknowledging my appreciation to the wonderful person you are and facing my own idiosyncrasies with honesty. You embrace people and you accept people and you teach us that no matter what a person’s beliefs are or their sexual preferences are or whether or not they walk or roll or if they are black or white……we are all the same inside.  We all deserve to be treated with kindness, dignity and respect.  And it is a lot easier to  open our minds to something different than to spend negative energy  passing judgement!

Less judging and more acceptance. What a wonderful world this could be……………

In Peace and Love

Always

Mary

It has been said in this blog over and over again to the point where some may be quite sick of hearing it………..We need to become a more accepting society!  What better way to achieve this than to bring a valuable exercise to a whole student body.  AND did that student body step up or what?  For 196 people to sign up for this event shows a large percentage of the school accepting a challenge to open their minds and to celebrate difference.  I won’t say too much about what it is actually like maneuvering around JUST for the day in a wheelchair because that may take the fun out of hearing what other’s have to say about it.

I just know from my own experience that I watched as the years went by and I saw with my own eyes and my own hurt soul as people started to treat Sam and Alex differently as their outward physical appearance changed.  They stayed the same on the inside so why would this happen?  I would ask myself the question each night as I lay in bed, preparing for the next day of challenges. I was dedicated to staying strong for them and paving the way if I had to.  It was bad enough dealing with the reality of having a progressive disease.  I still wanted them to become strong, kind and productive people in society.  Really, what any parent wants for their children.

However, over and over I found that their peers disappeared, some teachers treated them differently even State agencies who were set in place to help would become adversarial.  Through it all they stayed “differently the same”.  I love them for what they have become!  They both move forward with grace – ok Alex is a bit more graceful than Sam !  But Sam has that sense of humor that kept her going through it all!  That sense of humor and ability to laugh is what I admire about her.  Alex has had to fight for so much and as quiet and insightful as she is she is making it all work.

So THANK you to Open Your Heart!  You are working like bees to raise money (with TONS of help from the community) to make the living environment so wonderful for us but what you are teaching in this event will help so many others in this world.  You will be empowering any person “of difference” and enlightening so many young people along the way.  You are helping me keep up the momentum to make this world a better place.  For that I will always be grateful.

And………THANK YOU to all who have signed up for  Open Your Hearts – See How We Roll!  I hope you are able to look inward and access life from  a different perspective.  You are on your way to becoming a more open minded and compassionate human being.  What a great step for mankind, a life lesson that you will always remember!

Can’t wait to see you all on Friday!

In Peace and Love

Always

Meir

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

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

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!

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

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

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

no matter what...knowing they are always there for you!

So I have started to enjoy writing these posts.  What I have discovered is that I only feel compelled to write on good days!  About the fun times, the inspirational encounters or happy days!  So quite honestly I haven’t written in two weeks because it has been a heavy uphill battle!  BUT!  As always I have been able to find the good in the challenge.

It all started about 100 years ago (really two weeks today) when I went to yoga class with Janie.  I have been doing yoga now for about 14 years.  I started when Sam was diagnosed in 1995, I brought her to a doc in Boston who specialized in integrative medicine.  He wanted her to eat, drink and breathe yoga!  So we started together.  She hated it…….I loved it.  It has brought me through some very difficult times.  It is exercise, relaxation and discipline.  I always walk out of a class feeling so great!  There isn’t a drug in the world that can make me feel like that.  SO!  I am at this yoga class and it is a great one!  Each person is responsible for their own level, and knowing what they can and can’t do.  I know that much……so what the heck was I thinking???? I knew I threw out my back when I left.  But the overwhelming relaxation and empowerment overshadowed that dull pain until Tuesday morning!  HOLY COW!!!! I was down and out!

what's his name with sam

I spent the week, icing and relaxing and laying flat on my back so by Thursday I was feeling pretty good!  I was determined to bring the girls to Albany to watch the Giants practice and that I did.  It was a BLAST!!

yes siree! ON the field with the giants!

Despite the three hour ride we really enjoyed it.  I took Sam, Aly, Brina, & Annie and as Annie kept the mantra up that it was going to be a great day………..A GREAT DAY IT WAS! It ended with a fun dinner in North Branford where Erica and Johnny D met us and to me that is what is important in life.  Sitting down with friends; laughing, talking and sharing!

The weekend went just as well with working at the potato festival, helping

my friend suzy

Suzie with her Open your Heart for the Community project (namely US)  and on Sunday cooking with my Chamber Friends.  Life is certainly good to me!

Becky is one in a million

Monday morning I got up so excited to get back to work.  Dressed in my MJ McCabe Garden Design shirt I got up early to help Sam get ready for work and we headed for the car bound for ESPN in Bristol.  It was an ordinary transfer into the car,  I do it all the time.  Until I realized that I had her wheelchair too far from the car and she slipped.  Please don’t worry!

I would never let Sam fall!

I caught her and also felt the excruciating rip in my back.  I got her into the car, hobbled into the house, grabbed the ice pack and headed for ESPN!  I refuse to give the grisly details!  It was a bad week!  It was a week filled with unbearable pain, many drugs and zoning in and out of reality.

Mary? Are you ok?

But what I can tell you is this!  Family and friends are amazing!  Even when they are yelling at you.  They do it because they love you .  Once again Jackie came running down……….

came in a moments notice

I couldn’t get up and I couldn’t lay down and anything inbetween was impossible.  She actually knew I was in trouble.  She said as she was sleeping my mom was trying to let her know.  It was very weird.  I waited until 7am to call her and as she picked up the phone in this very concerned voice I heard, “ARE YOU ALRIGHT?”.  She was down in a flash!

The girls stepped up to the plate and handled so much for me.  They have the best PCA’S, no I have to call them friends or even extended family because as boring as it had to be for them, they kept the house running and everything on track.

Aly and Lauren really helped

gee! who could this be?

Friends brought dinner, arranged for rides, did cleaning and all the while I laid flat on the couch like a vegetable!  Amazing how many people it takes to do what I do!

Suzie keeps telling me that my spirit guides are trying to tell me something.  Believe me, I am the first to admit that we all need to be more compassionate.  I wonder if I REALLY DON’T know what it is like to have to depend on people?  I mean this past week I couldn’t even walk across the room!!! HMMMM  WHO do I know that has that problem?  I think I will keep digging down into my soul and see what I can do to improve myself!

Gimme JUST one taste matt!

Maybe I need a humbling experience?  A little humiliation?  Well, if anyone has any suggestions please give me a shout and let me know what I am missing!  I am always happy to do what I have to, to improve myself!

So things are looking up!  And by the way isn’t it funny looking at my friends from down on the couch?  We are busy working on the fundraiser.  No I haven’t been back to work yet, but there is just no reason worrying about something I can’t change right now.

friends... here in the good times and bad

I am seeing an Ortho guy today and hope to get into Jackie Kos this week and slowly work my way back to “normal”!  This time I will spend more good energy exercising and doing what I have to do to keep myself in great shape and more flexible!

The people in my life depend on it! And they are all getting stiff necks from looking down at me

sick of that ceiling!

I know one thing for SURE!…………….

I have way too much to do in life to sit and watch the cracks in the ceiling!

So!  Count your blessings today!

I know I will…….Glad to be sitting and able to drive 1/2 mile to Big Y !  YaHOO!

In Love and Peace!

Always

Meir