Strength in a Heartbeat, Diary of a Heart Transplant, why I created my book


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      My book Strength in a Heartbeat, Diary of a Heart Transplant was created from a
journal I would write in when Lauren and I were living in Brigham and Women’s Hospital in Boston Ma. waiting for her gift of life, a heart.
So many people encouraged me to turn my journal into a book.  After a long thought process, I decided to do it.  My goal for publishing our story is to help other’s that are living in the same situation we were in.  To help them feel they are not alone.  When we were living in the hospital, many miles away from family and friends, I felt very alone, scared and always wondering what the day would hold for us.  Is it going to be a good day or bad day?  Sitting there watching my daughter connected to so many machines, always feeling like I just want to take her and go home back to our life before this all happened. Asking God, “why” and to please help her, give her the strength to get through another day.  A mother should never have to watch her daughter live this type of life.
When I finally decided to write my book, it was very hard.  I was reliving every day over and over again.  It took me two years to complete the process.  I found a great editor to work with to help perfect the final product.
So now the manuscript is now in book form, time to find a publisher.  I self published from the company Createspace.  This company took me through the process of creating my book cover and formatting my book the way I envisioned it.
I highly recommend this company if someone wants to self publish a book.
I released my book for sale in August 2017, since then it is now selling on Amazon, (paperback and kindle versions), Shop on the Pike Gift Shop in Brigham and Women’s Hospital gift shop and also Odyssey Bookshop.
I am hoping this book will help people understand the organ transplant process and the importance of becoming an organ donor.

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TO SUM IT UP:
I have slept in a hospital chair, window sills and couches.  Skipped meals and cried from fear.  I have become an expert on Lauren’s condition.  I am a strong advocate that had to make life changing decisions.
​    I am a parent of a medically complex Warrior !!!​Lynne Robitaille

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Writing from the Heart


I would like to thank the Chicopee Register for such a beautiful article they wrote on my book,
“Strength in a Heartbeat“, Diary of a Heart Transplant.  Thank you Chance Viles writer of the article.
Strength in a Heartbeat, is a journal I kept when my daughter Lauren Meizo was placed on the heart transplant list, living our lives in the hospital.  I am sharing our story in hopes of helping other families living in the same situation we were in.  Living in a hospital is hard, very hard, and lonely.  I want other families to know they are not alone.  I have created a Facebook page; Strength in a Heartbeat, a forum for families to  communicate with each other waiting and also to those who have lived it.  We all need a support system, I am hoping this will become one.
I know I am not the only one who could say this:

I have slept in a hospital chair, window sills and couches.  Skipped meals and cried from fear.  I have become an expert on my child’s condition.  I am a strong advocate that had to make life-changing decisions.         Lynne

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Click on paper to read the article

Click on book to purchase 

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​To purchase your copy, please click on book, selling on amazon and 
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Surgery again in our household, Lynne’s story


Yes, I’m having surgery tomorrow morning.  January has been a hell of a month for us.  I’ve taken take of my daughter now it’s my turn to take care of myself.

About 8 weeks ago, I started to experience pain in my back that traveled down into my right leg.  Didn’t think much of it, until it started to get worse with no relief.  I finally had to call my Dr.  A couple of years ago, I was experiencing lower back pain.  I was diagnosed with Degenerative Disc Disease‎.  I did physical therapy and it went away.  But now it is back.

First they tried me with 800mg of ibuprofen.  The pain just kept getting worse.  Then they gave me prednisone which is a steroid for 5 days.  Nothing.  After that I received muscle relaxers to help.  This was around Christmas time now.  I can honestly say, it ruined my Christmas.  I had a couple of mimosa’s in the morning trying to enjoy my Christmas morning with my family, but it is true you cannot mix booze with muscle relaxers.  Let’s just say, I worked so hard to have a beautiful Christmas for my family and it did not turn out that way.

Went back to my Dr. and now they had me go for an MRI.  At this point the pain was just ongoing.  Every moment of the day, it has been getting stronger and stronger.  I cannot sleep, and if I do I end up waking up around 2-3 in the morning with pain that I have to stay up.  Laying down makes it throb more.  When I had the MRI done, it was so painful.   I could not lay still, my back and leg kept going into spasms.  I had to just bite down on my lip and keep telling myself you can do this.  The whole time I was having this done, I kept thinking about my daughter and all the procedures she had to endure.  If she could go through the hell she went through, then I could do this.

Results from the MRI came in. I was on the phone with my Dr. and she said “normally I would have you come into my office to talk, there seems to be a mass on your spine”.  I really wasn’t sure I heard her correctly so I said to her, “are you saying that I might have the C word. (I couldn’t say the word).  She wanted me to see an Neural Surgeon.  I just sat there and cried, I felt like my whole world just ended.  About an hour after I got off the phone with my Dr., my phone rang and it was the surgeons office calling.  They wanted me to come in that day.  Now I was really scared.  Called my husband  and he was home before I could get myself together enough to be able to talk.  We went to the office and to our relief, it is not a mass.  I have 2 herniated disks that is hitting my sciatic nerve and the image she saw was my bone protruding out a bit.  We scheduled the surgery but it was going to be 3 weeks away.  So for the last 3 weeks I have been living with a pain I wouldn’t wish on anyone.  They have me on percocets to help with the pain, but it is really not touching it.  This is how bad the pain is…Dean and I were invited to go to the Patriots playoff game.  Great seats so there wouldn’t be that much walking.  At first I said no, I was afraid I wouldn’t be able to walk it, but then said the hell with it, I can do this.  Well, I only lasted till half time.  Thank God we had a hotel room close to the stadium.

So tomorrow hopefully I will be able to get rid of the pain I have been living with.  When we went to the hospital with Lauren I actually had to use a wheelchair, I could walk the hospital.  I am very nervous about having back surgery, but I have no choice at this point. I guess it’s Lauren time to step up and take care of her mom for a bit.

So to all my friends out there, if you haven’t heard from me in awhile, this is the reason why.  Just staying in and trying to find positions that try to make me comfortable.

Wish me luck

Lauren told me, “you got this mom”.

Love Lynne  1437940979_love_valentines_day_11

Giving Thanks


On this post I would like to give thanks for being home with my family.  Something that so many people take for granted.  The little things in life.

  • Waking up in your own bed.
  • Sitting in your pajamas and having that first cup of coffee.
  • If you are hungry, going into the kitchen to make something to eat.
  • Take a shower then be able to pick out whatever you would like to wear for the day.

These are just a couple of examples of things that I will never take for granted again in my life.

When I was living in the hospital with my daughter Lauren, I could not do that.  When I would wake up in the morning (from a disturbed sleep from all the nurses and Dr.’s coming in and out all night), from my couch that was my bed, I had to go into my suitcase and pick out what outfit to wear.  Slim pickings, so many days I would have to wear the same cloths.  Depending on what was going on for that day, a shower would be in question.  So a lot of the times it meant a sponge bath to make myself feel human and presentable.  Then it was “I need a coffee”.  Get money.  Walk down to the cafeteria, make my coffee wait in a long line to pay, now I can sit with all the hassle and bustle of all the hospital employees going on about their day ahead.  So relaxing, NOT.  Living in a hospital is very expensive, so I would pass on breakfast and wait until around 2p.m. to eat.    Most of the time I would snack on crackers, that was on the hospital floor. To be able to have a meal, it meant going back to the cafeteria, walk around to see what they were serving.  Most of the time I would opt for a salad, it was a make your own.  When you got and pay they would weigh it, so I would get a salad and a drink we are looking at about $10.00.

Theses memories are so real.  I will never forget that way of life.  This went on for almost a year and a half.  As I am writing this, so so many people are living that life right now.  Family members that are living in the hospital with their loved ones.  Someone is waking up, packing up their bedding and probably saying to themselves,” I can’t do this another day”.  Then you look at your loved one laying in the hospital bed, hooked up to machines and you say to yourself “Yes I can”.

To everyone living in a hospital, you are not alone.  I feel your pain, your frustration.  I was blessed and I am home now with my daughter.  My prayers are going out to you for the strength you need to go one more day. One day at a time.

If you need to vent to talk, please contact me.  I can relate to your situation.

lrobitaillecld@aol.com

Lynne  1437940979_love_valentines_day_11

Lauren has Pneumonia, no hospital stay


The last couple of weeks, Lauren has had a cough that was not getting any better.  Every time Lauren doesn’t feel good, I go into panic mode.  Flash backs are so real.  These feeling are so real.  Not sure if I could live through this image again.  Lauren is not in the hospital, but this is what I see in my mind, when I think about Lauren when she doesn’t feel well.

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Lauren’s immune system is compromised from the heart transplant.  She needs to be very careful of any sickness that is going around.  With all the sanitation and Lysol I use in our house, I cannot kill all the germs.  Impossible to say the least.  Life is around us.

Many germs can cause pneumonia. The most common are bacteria and viruses in the air we breathe. Your body usually prevents these germs from infecting your lungs. But sometimes these germs can overpower your immune system, even if your health is generally good.

On Monday, Lauren went to her doctor.  After her exam, they sent her to the hospital for a chest X-ray.  The X-ray showed she has pneumonia.  Thank the Lord, the Dr.’s said we caught it early.  No hospital stay, they put Lauren on Zithromax Z-Pak.  So the next week, I am praying the medication works and takes care of her lungs.

With cold and flu season here, please be mindful of your surroundings.  Germs spread everywhere.

Lynne1437940979_love_valentines_day_11

Two Historical Dates


What is going on in this world?

We now live in such a different world than our parents lived in,  with all the technology we have, is the world really a better place?

The USA was attacked on 9-11.  Paris was attacked on 11-13

Those two dates are important to everyone now, but they were always important dates in my family.  My birthday is 9-11 and my son, Michael’s birthday is 11-13.  What are the chances.

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Our hearts go out to all the families that lost loved ones on those dates.

Lynne  1437940979_love_valentines_day_11

Message from Ireland


I felt the need to post this message, if anyone would want to attend the service if you live around the world.  It will be webcam.  In the USA here it will be at 7:00a.m.  Please check your time differences.

Cian will be reposing at his home today, 34 The Village Green, Carlanstown from 2pm – 8pm. Removal on Friday morning (house private please) for funeral mass at 12 noon, Mass of the Angels in St. Colmcille’s Church Kells. Burial afterwards in Staholmog Cemetery. Cian’s mass will be streamed live for all his friends worldwide at http://www.kellsparish.ie/our-parish/webcam 💜

Lynne 1437940979_love_valentines_day_11

A mother’s message, Lisa Cian’s Mammy


This morning, Cian’s mother Lisa wrote a message of thanks and love

“I want to thank everyone for the messages of support during this difficult time. I haven’t read most of them yet or answered you all but thank you. Donal, Chloe and I are completely devastated by the loss of our beautiful little Cian. I am just so honoured to be called Cians Mammy. He thought me so much and definitely made me a stronger and better person. He made alot of people better people. In a lifetime no one would endure what he did in four short years yet he always had a beautiful smile on his face. I love my boy so much. I can’t imagine what is ahead and life without him. No parent should ever have to endure the heartache of losing a child. I can’t describe this awful pain. I’ve never felt pain like it before. I’m going to try to be strong for Chloe and Donal and I know Cian will help us too. Our house was always full of chat and fun because of Cian. Peppa Pig was always on. He bossed me around the place and I loved it. He always told me he loved me. I’ll miss his lovely big hugs and kisses. I’ll miss our busy life. Anybody who met Cian or heard his story were touched by him and loved him and his beautiful personality. I am so proud of Cian. Last night hundreds of people gathered outside our house with candles and sent lanterns into the sky. They even sang one of Cians favourite songs “Twinkle Twinkle Little Star”. It was so beautiful.
Cian was always such a special little boy, now he’s a beautiful angel.
I hope you are happy little man wherever you are and I promise to keep your memory alive.  I know I’ll see you again.   Thank you for everything.”

          I love you so much forever. From your Mammy x

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My message to a mother who lost her little man, who never received his transplant

Lisa,  I cannot even imagine the pain you have within you at this time.  Your son Cian, touched my heart following his journey.  The love that the world showed, with all their support in helping  Cian in achieving the funds to be eligible to be able to place on the double lung transplant list in Boston.  I have many times, wrote about Cian on my site to help get his story out.  Many of my followers, sent messages of hope and prayers for your son.  Cian will always be in our hearts, and never forgotten.  I showed my husband yesterday the post I wrote.  As he was reading it, tears were rolling down his face.  He told me, he cannot imagine the pain a family must feel in losing a child.

I truly feel that, Cian’s journey should never be forgotten.  My daughter Lauren was placed on the heart transplant list on March 13, 2013.  She received her gift of life on December 30, 2013.  Just as Cian had a very rare disease, my daughter Lauren was also diagnosed with a very rare muscular disease called Laing Distal Myopathy.  We were told that, there are only five other people in the world with this disease also.   And  Lauren also has Scoliosis.  When she admitted into the hospital, Brigham and Women’s in Boston Ma., she was in heart failure at the time, that is when they brought up a transplant.

I truly feel people need to be educated about transplantation.  If you need one, you are not automatically place on the list, like the movies perceive.  So much is involved in the process of being accepted.  We were very close that Lauren was not going to be placed.  I can remember many nights praying that Lauren will be given the chance for a second life.

When I think of all the thousands of people who helped Cian raise the funds he needed, to come back to Boston to be able to be placed on the transplant list, it is very humbling.  My feelings, I believe our world needs to change.  If you have insurance, I find it unbelievable that the hospital in the USA wouldn’t accept it.  I know this will not bring Cian back, but I feel this needs to be addressed.

From one mother to another, sending prayers to your family from ours

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Love Lynne  1437940979_love_valentines_day_11

I have a follow button on my site, if anyone would like to follow my post.  Thank you

lrobitaillecld@aol.com

Rainy days,


When it rains, it brings back so many happy memories

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“I always like walking in the rain, so no one can see me crying.”
― Charles Chaplin

Rain has so many different emotions for me.  The one that I feel when it rains is happy.  I know many people would say “really”, but yes it is true.

The quote above says, no one can see you cry.  Happy tears.

Since living in the hospital with Lauren, every time she was allowed to go outside for a bit, (it didn’t happen a lot), but when the doctors would give her permission it was raining.  We didn’t care, Lauren needed to go outside just for her sanity.  I can still picture in my mind, the first time.  Lauren, her nurse and myself wheeling her outside, we were under a covering from the hospital.  Lauren told us to wheel her into the rain.  The moment the rain hit her, she just put her head upward and said  “this is the best feeling in the world”.  I stood there and watched her.  Tears were rolling down my face, just watching how happy she was.  She just sat in her wheelchair, with a big smile on her face feeling the rain as if it was the best thing in the world.  And it was.  Lauren watched cars driving by, people running to get out of the rain and she was in heaven.

It reminded me how we take so much for granted, just the little things like rain.  After that day, when it would rain and I would go outside, I would look at the rain with a different outlook.

Every now and then, a rainy day is a welcome.  We need it to water our yards and gardens.  I look at it as a cleansing of the air also.

Next time it rains, take a moment to think about people who would love to feel the rain.  To you it may be an inconvenience, but to many, it would be a dream come true to feel it.

Lynne 1437940979_love_valentines_day_11

football season is here…..


My fun post.  Football season is here..  

                      My buddy Joe and I wearing our new customized Patriot’s jerseys.  We are Patriots fan’s so we thought we would join the team with our last names on them.  The numbers are special to us, they are not player’s numbers, they are our own.

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Football season to me means, good friends getting together and just letting loose for a couple of hours.  Hooting and hollering.  Sometimes you just need to get it out of your system.  It’s my release.

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Let’s have a fun and exciting season.

Now a dedication for my husband, Dean.  Oakland Raider’s fan for life.

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He will support my team when they play, so I support his team when they play.

DSCN2860yes that is me, we went to a Raider’s game in New Jersey, I hate to say this, but had a great time hanging out in the black hole. Raider fans know how to tailgate. OMG

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Seats were amazing, 5 rows up.  They were playing the Jet’s.  Not a Jet’s fan at all. So after a couple of beers, I had a great time.

LET MAKE SURE WE ALL HAVE A SAFE AND EXCITING FOOTBALL SEASON.

Leave a comment, just wondering who your favorite team is???