Mary Caruso

This was a pretty amazing weekend, I must say.  This post could be about a hundred pages long but I will try to cut it back to some reasonable length.  It started with the dinner I made for some amazing people but first I have to talk about the “project”.

Although it is pretty overwhelming last weekend  proved to bring more people on board and even more kindness to us (as if that were possible .  On Sunday morning we were invited to the Congregational Church for the confirmation class ceremony.

The group of young adults had done some fundraising for the project as their missionary work and they  presented us with a check.  As I keep saying, the money is unbelievable but the actions of the people around us is priceless.  This group of high school kids really put themselves out there to raise funds.  They walked door to door to collect money from the community and by listening to each of them talk about the experience, you could tell they gained a lot.  I was able to thank them and express to them how much it meant to us that they they felt compelled to work hard for the girls.  They felt the value in the bringing comfort and joy to them and in doing so they took one small step for awareness and the value of each person.  It was heartwarming to be part of the ceremony.  From there Sam and I ran to the brunch at Lombardi’s in Northford.  The room was full of our friends and people in the community.  Megan and her husband and staff worked so hard to make this wonderful brunch a great success.  Again, all I can say is that is overwhelming to see so much support in the community.  As the foundation is finishing up and so many are still supporting this project in a big way it brings a lot of  emotion to us.  Not sure why or what we could have done to deserve so much kindness…..

But before all this excitement on Sunday I have to talk about the dinner that was purchased at our auction.

In September I again hosted a fundraising event for The Friedreich’s Ataxia Research Alliance.  It was the usual “Big Fish” event for me personally as so many kind and heartwarming people came forward to support us in our search for a “cure”!  During this years even there were a few new people along with the die hards.  Two of the usual die hards happen to be Craig and Maribeth.  They are soooo good to the girls and me, I have a hard time thinking about it.  I met Craig years ago when he was a med student at Yale.  Time slipped away but as life usually has it the circle came around and he and Maribeth came back into our lives.  We are very VERY lucky for this.  He brings a group along with him each year to the fundraiser and they really make the event.  They are all a riot!  Well, once again this  year the group won my annual dinner for ten people in their home!  The dinner was this past Saturday night and I must say it was quite the experience, one I will surely never forget.

I cooked and baked for two solid days, not wanting to disappoint everyone, I kept adding to the menu.  

I must admit, I love to bake and cook and to do it for such wonderful people was an honor!  I couldn’t wait to serve the food and hear the comments from the group.  Along with the joy of serving this dinner was the joy of working it with some of the best friends a person could ask for.  It was the “fun” bunch. Suzy and Fred, Allison and even Felicia came down from the big FARA headquarters to help out.  Sam and Alex were invited guests so got to sit at the beautiful table that Jean set.  Her home is warm and beautiful!

What was amazing to me was that even though this was a group of very accomplished men and women, you would never had known it.  There was not a stuffy person in the room.  The group of 10 (12 with Ally and Sam) were funny and warm, kind and generous and well just plain old regular people.  It was pretty obvious that these people really knew how to treat all people with dignity.  The girls sat at the table with them all and were engaged in most of the conversation.  Without even thinking about it, the group would cut food for Sam and Aly, pick up the occasional piece of food that flew across the room, fix a foot that fell off of the wheelchair pedal, hand a glass of water to them. it was second nature to this group of incredible people.  The amazing thing is that the appearance of these obvious actions (eating differently or the inability to hold a glass of water) are looked upon by many as odd or different when in reality it is just what it is, an outward appearance not having anything to do with the person inside.  So maybe it is because Jean and her husband live with the same obstacles so they have educated their friends?  Or maybe Jean and Jack are such genuine people they attract the same warm and wonderful friends?  I think that may be it!   Jean and Jack have a son with adrenoleukodystrophy (ALD) disease.  He lives with even more obstacles than Sam and Alex do.  Outwardly their son Brian has so many hurdles to overcome to reach each of us.  BUT if you take the time and put in the effort you can see the beautiful spirit inside this young man.  You can see his reaction to Sam’s annoying sense of humor.  You could feel his compassion as I spoke to him about a quieter dinner one night with the girls.  We saw his beautiful art work and the sensitivity his his eyes. The problem is most people can’t or don’t want to open their hearts to see the person inside.  What a loss for people like that!

So do I appreciate the amount of money this group of people donated to research?  ABSOLUTELY!  I can not thank them enough.  But am I grateful for the experience of being so warmly welcomed into the home of this family?  Do I feel honored to know each and every one of them?  You bet!  Am I humbled by their sensitivity and ability to look beyond a disability?  Yes!  More than anyone could ever know.  I am now a better person for having been at their dinner.

So I will leave you with a photo essay of some pretty amazing people, who as the day of Thanks approaches I can honestly tell you that I am thankful for each and everyone of them.  For as a group and individually they all make the world a much kinder and gentler place.  Enjoy this holiday week and embrace each person as a human being.  Remember that each of us has a value and deserves dignity and respect.

Allison & felicia prepping!

With Peace and Love!

suzy did a LOT of dishes...

Always

Mary

A man in the kitchen?  Yes and a very capable man !  Thanks Fred!

These guys know how to have fun !

Good Food, GREAT people and WONDERFUL FRIENDS!

Now that is something to give thanks to!  :-)

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

There have been a few life lessons this week that have really hit home for me.  One of the important points to make is that although I am “ha-hum” considered older now, I can admit that I am still learning.  As I  go through a year of many transitions I find that the more relaxed I am and the more open minded I stay the more I learn!

The first interesting lesson was one that Sam and Ally experienced.  Obviously when it’s linked to your kids you immediately build jump start your defense mechanisms.  All you mom’s know that feeling!  Do NOT go after my kid!  Well that is the first mistake, I try to always take a few to absorb the immediate desire to defend.  For us life is “different” anyway.  Many of your kids out there that are in their late teens and early twenties have many altercations that you as parents are not even aware of.  That is how our young people develop social skills and coping skills along with any unpleasant experience.  But for the three of us as we are attached at the hip,  I happen to know just about everything in the girls lives (most of the time against their best wishes .  

SO- one of Sam’s personal care assistants happened to see the television show that we were part of from 2007 called Keeping Kids Healthy.  Her opinion of the show was not as positive as our opinion of the show. My feeling is that everyone is entitled to their opinion.  However, this person’s verbal remarks were somewhat offensive to Sam.  Her feeling was that the girls were portrayed as charity cases.  This snowballed into some pretty BIG drama.  You know, “he said she said”.   Through it all I turned into a sounding board.  When I first heard the comment I admit I was taken aback.  It is very hard not to take words like that personally. The show was a great learning experience for us.  We spent a lot of time with the crew, we were interviewed quite extensively throughout the process and then of course you’re done so you then let it go at the end because the result of a show is in the editing.  We felt and still feel positive about the show.  The girls both felt bad about the comments of this one person and worse about the drama which pulled in many people.  But in the end, the three of us have pretty much agreed.  I think I can speak for Sam and Alex feeling the same way that I do.  First of all, learn from ANY experience.  The big lesson is think before you speak!  Everyone is entitled to their opinion but you should most certainly consider the other person before you talk, especially if it is a direct hit on their life. THEN, spend some time thinking about how you  feel before you retaliate !  Sam and I have been going at this one since she was about two!!!! A lot of agony could have been averted if after the initial comment was made the girls had considered how they would move forward and then DROPPED it!  They were as responsible for the drama as anyone else.  Since they were both so insulted they had decided to let this person go as an employee.  Both Sam and Alex had this person work for them and both felt betrayed and belittled by the comment so that should have been the end of it. I think they both learned from this experience and hopefully have grown from it.  It is about acceptance isn’t it?  Life is easier when we accept each other.  Putting yourself out there is difficult.  The show was viewed by hundreds of thousands of people, the producers were incredible and gave the show (IN MY OPINION) heart, soul and honesty.  They won a New York Emmy for their efforts and these women both continue on in their work trying to make positive change in the world!  In all the comments we have received from the show-thousands- this has been the only remotely negative comment.  So let it go!  And finally they did!  Good job Sam and Ally!

The show link is in the box on the right!  http://www.keepingkidshealthy.org.  Click on the link that says watch this award winning show on Friedreich’s ataxia.  I would love to hear some comments on what you think of the show. Yes, even if it isn’t a positive comment-just keep it constructive !

The other really odd thing that happened  this week was on a very personal front for me.  Every morning I get up and run a mile.  It is one perfect mile down my street and back, and it is quite  a beautiful mile, I must add seeing the river, wild turkey, deer, birds etc.  The neighbors are the best, historic homes and just peace!  This week I ran down without seeing anyone, but on my return I could see a person in the distance and as I got closer I could tell that they were going pretty slow and then noticed that they were pretty much struggling with their mobility.  Then I saw the walking stick and knew that this person had some pretty incredible perseverance……….I began to slow down a bit so I could acknowlege this person and make some kind of connection.  As I approached, I could see it was a man who yes indeed could walk but with intense effort.  But as we confronted each other I no longer saw the struggle but what greeted me was the most incredible smile!  This guy was amazing……….you could see the spirit in his eyes and his smile was just embracing.  He said GOOD MORNING with his eyes and his heart and he made my day! Now, why did he make my day?  I asked myself this question the rest of my run?  Did I feel sorry for him? ABSOLUTELY NOT!  did I pity him? NO WAY!  He humbled me!  He gave me the fuel for the day.  As I came around the back of my house ready to end the run I looked to the left and saw Sam on the deck.  She was in this standing frame that we have.  It is the only way the girls can stand.  Jared straps them in this frame and then you can pump the seat up to a standing position!  They both get in the frame a couple times a week.

But she was standing and loving it!  She was throwing the ball to Rocky and I could hear her praising him, encouraging him and laughing!  She was enjoying standing there in the yard playing with her dog! Living life.  It is work!  It is work to stand for Sam, it is work to “walk” a mile if you can hardly walk at all!  I found myself crying as I ended the run.  Was I crying because I felt sorry for Sam and my new “friend”.  No, I was crying because of the diligence in both of them.  The desire to do better, to do what you have to do to succeed in life. What the heck do I ever have to complain about?  Nothing!  For them it is the simple things that WE (including myself) take for granted!  I see them both like everyone else in the world…..they just have to work harder and so deserve that much more respect!  

Charity cases?  I don’t think so……………………

In Peace and Love

Always

Mary