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

  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!

Always

 Mary