Mary Caruso

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

Another year! Another group of AMAZING people and most importantly one more step closer to a treatment for Friedreich’s ataxia.  This year’s fundraiser was a bit more difficult considering the state of the economy. But as usual the people who donate still donated and the people who come still came!

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