Mary Caruso

Help find a treatment for Friedreich’s Ataxia!

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 

:-)

  1. Rachel
    3:41 pm on May 10th, 2009

    I Love This! Its Perfect…a day doesn’t go by when I don’t think about her…<3

    Happy Mothers day!
    xoxo
    Rach

  2. Dear Mary,
    Thank you for your wonderful and touching mother’s day post. My mother died suddenly in 1988. Sometimes, I just don’t celebrate Mother’s Day, because my mother is not around. Thank you for reminding me that I can still celebrate and honor my mother. My thoughts are with you.
    Sincerely,
    Claudia

  3. Blair
    7:43 am on May 12th, 2009

    Thanks you Mary, for sharing your feelings about your Mom. The fact that your are the incredible mother that you are, is a tribute to the job she did as a mother. She will always be with you in spirit.

    Peace … Blair

  4. Suzy
    3:43 pm on May 28th, 2009

    I didn’t really know your mom, but she sounds just like you! Sam or Alex could be the ones writing your blog! How lucky they are! Happy Mothers Day 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!

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!

This is a great exercise for meeting people!

 

thinks this is a great movement! kindness!

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!

cab driver! great tips on the bike route!

 

 

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

In Peace and Love………

Always,

Meir

shy but was forced to talk to me, waiting for the subway!  loved the heart!
shy but was forced to talk to me, waiting for the subway! loved the heart!
  1. John D
    5:44 pm on March 15th, 2009

    Go Mary Go!!

  2. Jen
    5:59 pm on March 15th, 2009

    Pedal, Mary, Pedal!
    We are cheering you on all the way.
    You truly are an inspiration to us all.
    Love, Jen, Alan, Garrett and Luke

  3. Laura
    6:08 pm on March 15th, 2009

    Alex is sooo brave. Sam on the other hand has to have Matt hold her hand when I do her eyebrows. She is getting better I have to admit.

    I just took a deep breath for you for tomorrow. Wish we were there for support but I think the girls need the support here. They love you and miss your patience, love and kindness. They love what you are doing and are proud of you. You will do great. Really if you think about it, you have been through many more difficult times. JUST HAVE FUN and enjoy the ride.

    Keep Smiling:)

    Love Me, Jack, Matthew and Blue

  4. Allison
    6:12 pm on March 15th, 2009

    Oh my goodness, Mary – I can see how rainy it is there from one of your pictures! I’m so happy the hearts are a hit!

    Good luck tomorrow! My family is thinking of you & we’re all praying for you — we know you’ll do well :) You’re making everyone, especially Sam & Ally, sooooo proud!

    God Bless!

    Love,

    Alli

  5. Mark
    6:15 pm on March 15th, 2009

    Mary,

    I continue to be inspired by your messages. Ride like the wind. By the way, The Cake Eaters is getting great reviews.

    Mark B.

  6. Ron B
    7:44 pm on March 15th, 2009

    You go girl!!! Looking forward to seeing you Thursday at the finish line!
    Love from all of us,
    Ron B.

  7. Suzy
    4:26 am on March 16th, 2009

    Mary,

    you never cease to amaze me…your blog is so inspiring…your LIFE is so amazing! I am thinking of you and pedaling along for strength and support. Forget the weather, forget the hills, just think of the girls and all the others liek them that this ride will help. I am so proud and honored to call you guys my friends…love to you :)

  8. Tom D.
    4:57 am on March 16th, 2009

    OK, Mary
    Relax and breathe; all those walks down to the town dock helped you physically prepare for this bike ride. YOU CAN DO IT!!!! We are all praying for you.

    May God Bless you!

    TD

  9. Glen Bianchi
    6:03 am on March 16th, 2009

    You go woman…. You look great! Looks like you could end up with a date or two out of this!

  10. Cindy
    6:27 am on March 16th, 2009

    We love you MARY… Keep praying for the strength you need. God has sent your guardian angel along with you..
    Youa re in our prayers today as always!
    God Luck.
    love, cindy and gary

  11. Joe G
    7:20 am on March 16th, 2009

    Good Morning Mary

    This is it, and I am sure you are ready to ride. You have far more courage than you ever dreamed you could posses. Great beginningsare not as important as how one finishes. FINISH STRONG MARY!!

  12. nicki
    7:23 am on March 16th, 2009

    Hi Meir!
    Great article in the New Haven Register!
    We love you and we’re all cheering for you-
    You Go Mary!!!!!!

  13. Mike
    7:58 am on March 16th, 2009

    Make sure you have hand and toe warmers!

    Focus on what is a all around you and your bike and not on the obvious.

    When it comes to flying-What goes up must come down!

    love yah Mac!

  14. Jackie
    8:49 am on March 16th, 2009

    Meir, you are doing great, you will be surprised at how much strength you have inside you. You have and will continue to inspire me, I will see you soon, I land in Portland on Wednesday morning, see you soon. Love you, Jackie

  15. Alex
    10:07 am on March 16th, 2009

    You got this mom! Me and Sam are behind you this! Just remember its not a race! We are all so proud of you!!! Love you!!! <3

  16. Gina
    12:43 pm on March 16th, 2009

    Mary

    Good luck I know you can do it. Great to see some many hearts. See you when you get home. I’m sure the girls are so proud of their mom

  17. eve
    1:48 pm on March 16th, 2009

    Hi Mary: Airplanes, bicycles, rain, snow, hills, you can do it all with one hand tied behing your back. You are an every day hero who conquers all at every turn.
    Love, Eve

  18. Doreen
    5:02 pm on March 16th, 2009

    Mary

    Ride like the wind!!Everyone is cheering for you.I hope someone bakes you cookies to have on your trip.
    See you when you get back’

  19. micki
    5:12 pm on March 16th, 2009

    meir, how are you?how was your day, are you ok. love your gift, it made me laugh and made me cry. love you, micki

  20. Tracy
    8:14 pm on March 16th, 2009

    Mary,

    You are doing such a great job. I think of all the years I have known you and all that you have had to weather in your life. I love the plaque you have in your house that says…”I know god never gives you more than you can handle…I just wish he didn’t trust me so much.” That about sums you up, he has given you alot to deal with..but somehow he knows you can do it and get through it.
    I can just see you with the shy guy from the subway..he didnt want to talk..but I know he is so happy that he did. We need to connect more with people on a human level and you are doing that.
    WE LOVE YOU GUYS SO MUCH!!!!!!!!!!
    GO MARY GO>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

  21. jackie leonard
    5:12 am on March 17th, 2009

    Meir, I need you could do it, sorry about the weather, yuck! Hope today is better and you keep going, you give me inspiration and strength.
    We all love you and are thinking of you.

    Go mary, go mary, go mary

    Jackie, Darren, Seth and Sean

    PS Seth wasnt even mad that I was coming out there to cheer you on!

  22. karen
    3:32 pm on March 17th, 2009

    Congratulations Mary! I can not believe you did over 48 miles! You are so brave and a great inspiration! We all have a lot of fears, but you are out there conquering yours. Can’t wait to hear about day two! Good luck!

  23. Mary!! Thanks for stopping by our store! We still have your heart up on our wall!! It was great to hear your inspirational story and get to follow along on your blog. We’d love it if you would post some pictures of your ride on our Portland Title Nine Facebook page. :) Congrats on finishing your ride – it sounds like quite the adventure!

    Ginny & the gals of Portland T9

 


  I guess before I can really express my true convictions I have to write just a bit about how I became so resilient.  Especially this time of year, I believe we all look back upon our childhood with so many emotions.  I truly had the most amazing parents anyone can imagine.  

My dad was a business man who had a combined personality of intelligence, wit and compassion.  Even after his passing in 2001 I still have people coming up to me to tell me these wonderful stories about how he helped someone out when they were having difficult times.  He owned an oil company in my hometown of Rocky Hill.  He really was the pillar of the community involved in so many civic organizations.  He was so kind and generous.  We butted heads most of our lives but had a deep connection because we were so much alike.  I still remember the day he was so mad at me I thought his head was going to blow off.  But he never raised a hand to any of us instead he banged on the side of the house so hard I saw the shingles start to fall away!  AHHHH great memories.  My most precious memory is that of taking a trip alone with him in 1994.  I had never done such a thing and we had a blast.  We went to Florida together and I had the wonderful opportunity for the first time to see how much we really were alike.  We talked to everyone and made friends everywhere! Then when we found ourselves snowed in at Newark Airport we made people laugh-and I mean people who were pretty aggravated at the situation.  We were able to turn the mood around and laugh and joke with people in the airport.  I will always cherish that trip as one of the most valuable lessons in my life!

My mom on the other hand was a bit more quiet and reserved.  She was the apitamy of what a mom should be.  Beautiful in spirit and so humble.  Almost every day when I walked in from school her baking bowls and wooden spoons would be out and ready to bake some great new recipe.  She was the wisest woman and had the most insightful advice for many.  We lost her this past June and this season is turning out to be the most challenging for me so far in my life.  My sisters Marcia and Micki and I have still not moved her bathrobe from the hook in the bathroom, somehow it just doesn’t seem final until that is done. Mom had a heart of gold and was the most non judgemental person in the world-truly and genuinely!  She attracted people to her kitchen table her whole life-she was the best cook and was always such a delightful person to sit and talk to.  When I was a child I remember on May day she said to me, “let’s go pick all the may flowers in the back and we will bundle them and surprise people by leaving them at their front door”.  It was such an exciting adventure, and such a simple pleasure.  We had a ball running to our neighbors doors and leaving the anonymos beautifully wrapped bundles of flowers.  Thinking back it was the start of my desire to do acts of kindness and my mom introduced it to me at such a young age.

Together they worked as a team raising my sisters and me in the most wonderful home I could imagine. Marcia, Micki and I recently took time away from the busy season to sit and enjoy lunch together.  It was so wonderful!  We talked about how much our parents cherished family and vowed to see each other at least every other month.  I ask you this week to think about your roots, your parents!  The people who made you who you are today.  Let go of any of the bad stuff (cause there is always bad stuff with the good stuff) and really think about the good stuff. Whether they are here in body or in spirit hold on to that one great memory and place it in your heart!  If you have children try to talk to them about the good stuff that was brought to you and what you bring to them.  

Open your hearts today and enjoy.  May you find love and peace in this day. Oh yes and do something really kind, either to someone you know or maybe someone you come upon- YES even a stranger!  And even if it is just a smile and a hello.  Then comment on it- on how you felt to put yourself out there. Try it!

With Love and Peace & a Merry Christmas to all!

A Wonderful Christmas Day 08!

A Wonderful Christmas Day 08!

 

 

 

 

 

 

 

Always

 Mary

  1. Joe G
    6:30 am on December 24th, 2008

    Merry Christmas

    Mary, your blog was wonderful today. If more people could do as you ask and extend some kindness to the less fortunate how great a world we would live in. Good luck on your ride, you will be fine. I ride in the Pan Mass Challenge each year know for a friends little girl who has battled branin cancer for 6 of the 7 years she has been alive, and during the ride when its get a little tougher I tell myself I cant quit because Emma cant quit, I will quit when the time comes for her not to have chemo therapy, after she stops having seizures, when she can ride for herself only then will I stop.

    Thank you for what you are doing and have a very Merry Christmas and let the girls know their friend in NH is thinking of them and praying for them everyday.

    Joe

  2. Rachie
    12:41 pm on February 2nd, 2009

    I LOVE this entry :-) . I get choked up reading it…:-)The pictures are so wonderful. Its amazing how one photo brings back years of memories :-) I have the updated family christmas pic on my computer at home if you want it…I just need your email. The one mom gave me didnt seem right?!
    Lots of love
    Rachie
    xoxo