Mary Caruso

Learning to all get along with along with all people  is such a great life lesson.  What better way to learn to get along than to work with a diverse group of people who come from quite an influential background.  I am lucky to say that I am privileged enough to be part of (well kind of part of) a group like this.  I am returning from a tiring two day board meeting in Philadelphia.  Yes, tiring but also invigorating because there was presentation after presentation about promising work being done and then there were hours of grueling “housekeeping” choirs that kept everyone up to date about how amazing the board worked together and how important it is to offer stewardship to others and how beneficial it has been for research, to build credibility and connect scientists, government and the patient community.  I look around and quite honestly feel like I am a cartoon character in a realistic motion picture. There are people around me that have extensive backgrounds in so many different fields.  I really can’t say much except that I am honored and very very grateful that the future of my girls lies in the hands of these amazing people.  
What’s more is that because of these people on the FARA board, the community of patients and their families has in ten years moved from being strangers and a world apart to becoming a close and tight knit family.  In 1995 when Sam was diagnosed I was told among other things that I would probably never meet anyone else with this disease (and that is a quote!) and I left to face this lonely world alone.  But how things can change and how a little faith can keep you afloat.  Today the patient “family” consists of hundreds YES hundreds of people so dedicated and so determined to FIGHT this disease!   What more can you say than the word GRATITUDE to so many people!

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

loving supportive grandmother

Happy Mother’s Day to all mom’s

always showing her affection

This is the last of the firsts for me.  That may not make sense to some, but to anyone who has had a significant loss will understand that following the loss of that person means facing each first occasion without them.  Subsequent occasions don’t necessarily mean that you bounce back to normal but the firsts are just so empty.  Funny that the last of my firsts without my mom would be Mother’s Day.  I have been dreading this for two weeks now.  I have sat in front of this computer all week ready to write something but have not been able to.  I guess it’s fear, fear of facing the day without her.  People have said to me that I have my children but it is different.  To me Mother’s Day was about honoring my mom!  I never really thought about the mom I am because I always had her, and BELIEVE me she is a mom to be honored.  

mom and dad-soulmates

So this morning I sat again in front of this screen and could not work up the courage to write anything.  What the heck could I be afraid of?  falling apart? breaking down and crying? I know, no matter what I would bounce back. I would bounce back because of what my mom has instilled in me.  That is why I have beena ble to endure all pains and obstacles.  It is the product of two wonderful parents!

I thought I might mention some of the beautiful memories I have of my mom.  One of the most enjoyable things I keep in my heart is just sitting there with her in the morning at a table.  Any table! It wouldn’t matter where.  It could be my house, her house, on vacation………she would sit with her crossword puzzle and her glasses on.  Cup of coffee in front of her, not saying a word.  She really hated to be interrupted in the morning when she was doing her crossword puzzles.  But the energy and the silence was so special.  She was so intent and had such a beautiful way about her.  But after that puzzle was done! Forget it! You could talk to her for hours.  It never mattered what the topic was.  She would listen and then give such kind, wise and insightful advice, she NEVER judged and I mean NEVER! Then the most fun times were each time I had delivered one of the girls (and she did the same for my sisters), my mom would pack up her car and head to my house.  It was so wonderful having her around.  The joke was she would also clean your stove! There was rumor that Micki had just one more kid to have that experience of a shiny stove !  Joking of course!  My love of baking came from my mom, I can’t tell you how many joyful hours were spent baking and cooking with her! Then when my life really got challenging my mom was there every step of the way for me.  She would give me just enough advice so that she kept me going without interfering.  That is a true talent! But she was able to always keep me on the right road….you know the road less traveled!

lunch with some of the PICU team at Yale.

So today, when my eyes opened at 5am.  I initially didn’t want to get out of bed!  But I thought about what I preach and I decided to Take my Lane!  I knew what I had to do to take it.  I had to face the fear and challenge myself.  To get motivated I ran two miles then I did some yoga!  That gave me enough energy to think about the day. Then I decided I would pay tribute to my mom by doing something kind.  I would bring lunch to the mom’s that work in the ICU at Yale.  Alex has spent time there, my mom was a nurse and my cousin Jackie is working there today. So here it is at 9:30 and I am good.  I made some food, I put brownies in the over and yes, I am missing my mom.  And I will cry today, I know it!  I will miss her terribly today because she is just so special to me!

 Please enjoy your day all you mom’s.  And kiss and hug your mom’s today all you people who are lucky enough to have them with you.  If you have lost your mom, spend the day thinking of them and remembering the good times!  Reach within and take on one of the best attributes your mom had and make it part of you! 

In Peace and Love

Always

Mary 

I made it to Portland! (um- pouring rain!)

just getting my jacket & gear ready for tomorrow morning!

Sami & Ally this one's for you! I love you guys!

Well, it’s been a long 24 hours!  I was a nervous wreck that is for sure.  Not really for the bike ride but for the whole anticipation of the trip.  I get nervous just knowing I am flying somewhere.  But then it really is more about fearing more things as we get older.  Sandi and I were just talking about that.  It seems that the more comfortable we get with our lives the more fear we seem to have.  I remember being in college and thinking nothing of driving four hours to see Kevin In Vermont!  So I think that the older we get the more we have to push ourselves.  Think of it as staying out of complacency!   Facing our fears is just away of keeping our minds sharp and our hearts open.  This ride should be nothing to me compared to some of the stuff we have been through!  One of the worst times so far in this journey has been getting us all through Alex’s spinal surgery.  I can remember like it was yesterday when the ax came crashing down on me!  We had to see the ortho surgeon as a yearly routine thing to monitor scoliosis for both the girls. 

Every year for the first six or so years I would be so sick before the appointment.  I hated to see that xray of their spines.  So this one year would be different, I was so much more relaxed and at ease!  It was a crazy appointment.  I ran Alex into xray and then helped weight and measure her then put her in a room.  I went out and got Sam in xray then helped measure her, but when I went to hold her up we fell.  Of course I tried to make light of it but Sam was so embarressed and upset.  She said,  ”mom please just leave me here a minute.”  What else could I do but respect her wishes.  I turned and walked into the exam room, the surgeon was standing in front of Alex’s xray; as I stood in front of him he said, “Her spine has moved to 64 degrees we need to talk about a fusion”.  I remember feeling just like I did the day they gave me the diagnosis of Friedreich’s Ataxia.  I was there but I wasn’t.  My mind somehow coped by leaving my body.  Odd as it seems, you are aware of what is going on but you don’t have any feeling, you take it in and it registers but you are numb.  I wanted to just open the door and run…………..but I didn’t.  I went out, picked Sammy up and we both went into that room together.  Like we always do, face it together…….Like how my parents taught me to handle things.  So for the next months we got ready, as ready as anyone can get for this.  The night before her surgery I laid on the bathroom floor most of the night and vomitted!  It’s true!  With the exception of the phone call to my doctor’s office to tell them that I must be having a heart attack, I was sweaty and sick and my chest was caving in on me.  He’s reply was short and cold, he said of course I was NOT having a heart attack, a stomach bug was hardly going to give me a heart attack!  Boy was he wrong…..I was having an attack alright…..a please GOD don’t do this to my beautiful daughter attack.  So I did what I did that night that would help me get through the surgery for Ally.  And I was able to pull myself together for her and for Sam.  She was so brave through it all.  She was a senior in high school and she really handled everything at home.  That was her way of coping.  But we did it we all got through it!  And I got through it like I’ll make it through this journey because of so many people in our lives. Believe me I say it way too often.  We have fun but we are really a very high maintenance family.  I am so grateful to our friends who stick by us…..and it is mostly the people who read this blog!  So you all know how hard it is sometimes to stick by us!

I know at times I get tired of myself MYSELF!  But it is so hard to get away from me !

So thanks for reading this personal entry…….I think it is important sometimes to know that it isn’t all just a bowl of candy!  But we all go through this stuff and we all find our own ways of getting through………Mine is with the strength of so many wonderful people in my life!  So for that I say thanks!

This is a great exercise for meeting people!

thinks this is a great movement! kindness!

I’ll got to Portland by about midnight (3am Connecticut time)  I have given some hearts out to some GREAT people.  They are for the most part interested in being nice to each other.  Both pilots on my first flight took two .  I am meeting some very handsome guys for some reason .

One day left till we pedal off!

cab driver! great tips on the bike route!

Until then- oh yeah!  snowing in Seattle right now!

In Peace and Love………

Always,

Meir

Well, It is official………22 days until the big bike ride!  I realize that I have not written too much about how my actual training is going.  I have written about everything but…….So I will fess up now to how unprepared I really am.  However there is so much other stuff in life that is important yet relates to this whole journey…….don’t forget we are all trying to open our hearts and accept ALL people.  We are moving to co-exist as a nation of understanding and kind individuals!

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!