A mother’s message, Lisa Cian’s Mammy

October 7, 2015October 7, 2015 Lynne13244 Comments

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

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

Love Lynne

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

lrobitaillecld@aol.com

Cian is with the Angels now…. lost his fight on earth, but will always be in our hearts

October 6, 2015 Lynne1324Leave a comment

Sometimes real super heroes live in the hearts of small children fighting big battles

Cian McDonnell-Lynch. Lost his battle on October 5, 2015

A quote from the family ; “Our beautiful boy is with the angels now. He fought so hard. Heaven is so lucky to have him. We are broken hearted. His Mammy, Daddy and big sister Chloe held his hand until the end. Fly high our beautiful boy where there will be no more suffering or pain”.

I am writing this post with a very heavy heart. I personally did not have the privilege to meet Cian, but I have felt a very strong connection to him and his family during his fight for life. When I would read his mother’s post, I could relate and feel her pain in her words she felt for her child. I have contacted with the family, through their site, to give my support and express prayers we’re being sent out to them.

Cian was admitted to Crumlin Children’s Hospital to have his procedures, which was a liver biopsy and PEG insertion. The results of the biopsy was to determine, so that he may return back to Boston to be placed on the double lung transplant list. Unfortunately, during his recovery, this brave little soul, endured complications with his oxygen saturation.

Cian was surrounded with his family. His mother, father and big sister held his hand until the end..

Cian was loved by thousands of people. The fundraising events to help raise the money for his transplant was heart touching. During his short time on this earth, this little guy brought so many people from all over the world together.

To his family: My family here in Massachusetts USA, we are sending our heart-felt condolences to you. Cian will always be in our hearts.

Below is a brief summary of Cian’s medical condition.

Cian who was only four years old and his family traveled to Boston Children’s Hospital in the hopes that one of the world’s premiere hospitals can help keep him alive.
Cian has been fighting an often deadly bone marrow disorder called Dyskeratosis Congenita since birth. It’s a very rare disease
It affects one in a million. And Cian is actually at the more severe end of the syndrome.
The disease left Cian permanently blind at the age of one. He did get a successful bone marrow transplant two years ago, but the disease is now affecting his lungs with another rare and deadly disorder, microscopic pulmonary AVMS.
They’re actually microscopic blood vessels; they’re malformations, and the oxygenated blood is not getting around to his whole body.
They were told, that it’s actually progressing very quick, so they we’re just really hoping that he’ll be accepted onto the transplant list here in Boston.
Cian was given only a few months to live.
Cian was the first child that they’ve seen with this condition, It’s just so rare. Cian needed a double-lung transplant would likely save his life, but he was rejected for one at a hospital in London.
Cian and his family came to Boston Children’s Hospital as their last hope. The hospital begun running tests on Cian to determine if his body can handle the transplant.
The family’s Irish insurance policy will not pay for the surgery here in the states.
Between the procedure and recovery time, the family will need more than $1 million out-of-pocket to keep their son alive.
That heart-wrenching story has touched off a massive fundraising effort in Ireland that has spread here to the U.S. and as far west as Australia. Well more than 5,000 people around the world have donated. They were so close to reaching the amount that they would need to give Cian his gift of life. Last count I believe they were at $600,000.

http://www.hopeforcian.com

Please keep Cian’s family in your prayers.

Cain is now with the angle’s, in the sky. I would like to dedicate this song to Cian.

With much sorrow, Lynne & family

Rainy days,

September 30, 2015 Lynne13242 Comments

When it rains, it brings back so many happy memories

“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

Parent’s experience PTSD: Post Traumatic Stress Disorder

September 25, 2015September 25, 2015 Lynne1324Leave a comment

I came across this article written by Barb Roessner. For awhile I was starting to think I was just crazy or weak. PTSD : post traumatic stress disorder is real.

Living in the hospital with my daughter for close to almost a year and a half, was very hard. Always wondering and worrying with fear, no privacy and being closed in. All my freedom was taken away. After writing that sentence, all I feel is guilt. Oh my Lord, how my daughter must have felt. As a parent, I had to be the strong one for Lauren. I had to keep a smile on my face with tears from inside. When she was feeling down, I would do something crazy, like just break out in a dance just to try to make her laugh. She would say to me “your nuts mom”. Now when I think of it, I guess I was nuts. I was trying to cope with our situation also.

This picture was taken when we were watching a patriot’s football game. I was rubbing Lauren’s feet to make her more comfortable, and I was wearing my Patriot’s hat.

Living Life

PTSD is so real. There is not, one day that I do not have a flash back or memory though about what has happened. Some people say to me, you need to move forward. I am, but the memories do not go away. I guess I’m always afraid of going back.

To this day I still have a hard time going to a store, I can only stay in there for a short period of time, then I start to have anxiety, I do not like to be in close places anymore. Also, I have a hard time leaving my house. My house is my security. When I am home all is well. I know with time, it will get better but that saying “NO PLACE LIKE HOME” is so true.

Can Parents Experience PTSD from Their Child’s Heart Condition?
Written by: Barb Roessner

When most people think of post-traumatic stress disorder (PTSD), they imagine military veterans returning home from combat. Soldiers have been so exposed to human tragedy, their minds become conditioned to fight or flee, and surprising things—a firework exploding, someone dropping a book on the bus—could transport them back to the battlefield without warning.

People with PTSD may have trouble sleeping and struggle with constant anxiety. They feel like they’re on alert every second and struggle with memories of the traumatic events that are vivid enough to feel as if they’re happening to them again, according to the U.S. Department of Veterans Affairs.

But PTSD doesn’t just affect veterans. It can develop in individuals who have experienced any type of trauma—including parents who are watching their children struggle with a serious heart condition.

No, they are not in the midst of violence. And no, they are not bearing the medical burden of the heart condition. But the parents feel the agony of their child’s illness as if they are going through it themselves. They may always fear a meeting with a doctor, having heard the worst there before. Or they might forever associate their child crying in the night with a moment when the disease was especially trying.

Honestly, I think all families of kids with heart conditions have PTSD to varying degrees.

Think about it: the official definition of PTSD from the American Psychiatric Association doesn’t only include those who experience the trauma, but also those who witness it.

For families whose children have serious heart conditions, the parents’ stress level is high and rising all the time. We have cared for some families in which one or both of the parents sought treatment for PTSD. This usually happens during the waiting period: that time between being placed on the heart transplant list and actually getting a heart.

During that period, parents are on edge. They are constantly wondering when or if their child will receive a new heart in time. Then, they are faced with close calls that trigger their stress level to spike even higher, including:

Stroke
Kids with complex congenital heart conditions are at a higher risk of stroke. And not just 1 stroke, but they are at higher risk for recurrent strokes, according to a July 2012 study in the journal Annals of Neurology. Because their hearts are not functioning at their best, blockages can sometimes prevent blood from being pumped to the brain. Just like when anyone else has a stroke, this could cause serious disability or be life-threatening.

Cardiac arrest
Sudden cardiac arrest is a technical way of saying that the heart stops functioning. Congenital heart diseases—namely cardiomyopathy—are among the top reasons why children go into sudden cardiac arrest, according to a March 2012 study in the journal Pediatrics.

Extended waiting
Children listed for a heart transplant are more likely to pass away waiting than people waiting for any other type of solid organ transplant, according to a February 2009 study in the journal Circulation. As time goes by, the wait wears on parents, and it doesn’t get easier. That could be because one of the key risk factors for PTSD is feeling powerless, according to the U.S. Department of Veterans Affairs.

Then, there’s all the other complications that can happen. Some children have to have limbs amputated because of poor blood circulation. Some parents have literally watched their children stop breathing, turn blue and then had to entrust them to doctors and machines on faith that they’ll see them alive again.

For parents in any of these situations, when it’s a child—your child—you might as well be in the throes of a violent assault. The stress response is about the same.

I’ve only mentioned the medical complications. Let’s not forget about the strain on marriages, the financial burden that leads some families to bankruptcy and the issues that can arise with other children.

Why Addressing PTSD is So Important
The long-term issues of unchecked PTSD are serious, mainly because a prolonged fight or flight response is so taxing on the body.

Think about it: Your body is gearing up to protect itself from what it perceives to be an attack. The heart rate spikes to get more blood to your muscles, according to the National Alliance on Mental Illness.

Breathing speeds up, sometimes to the point of hyperventilating. Blood sugar spikes. If the body experiences this stress response too much, it could develop into long-term problems with high blood pressure.

This article is so true.

If you know someone who is in this situation please pass this on. They are not alone.

Lynne

Every 10 minutes, a person is added onto the transplant list.

September 23, 2015 Lynne1324Leave a comment

Statistics
Although there have been advances in medical technology and donation, the demand for organ, eye and tissue donation still vastly exceeds the number of donors. For more information, read the summary below or create a detailed data report on the UNOS Web site.

More than 123,000 men, women and children currently need lifesaving organ transplants.Every 10 minutes another name is added to the national organ transplant waiting list.

Sadly, an average of 21 people die each day because the organs they need are not donated in time.In 2014, more than 8,500 deceased donors made possible approximately 24,000 organ transplants. In addition, there were nearly 6,000 transplants from living donors.
Nearly 48,000 sight-restoring corneal transplants were performed in the U.S. in 2014.
Each year, approximately 30,000 tissue donors save and heal lives.
More than 1 million tissue transplants are done each year and the surgical need for tissue has been steadily rising.
According to research, 98% of all adults have heard about organ donation and 86% have heard of tissue donation.
90% of Americans say they support donation, but only 30% know the essential steps to take to be a donor.

Just a few fact’s that I think needed to be said again.

Lynne

Reflections

September 17, 2015September 18, 2015 Lynne13243 Comments

This is a follow-up post from yesterday’s post.

September 16, 2015 Lauren spoke at the Chicopee Chamber of Commerce Breakfast as a guest speaker for Donate Life. It was a packed house. We were both nervous. Before Lauren became very sick, I had a business called Country Look Designs Gift Baskets. When I had my business, I was a member of this Chamber, it was a great way to meet other business people in the area. I did see some familiar faces,which was very nice.

When Lauren was giving her speech, she mention that she had a PA line in her neck (we called it her leash). This is Lauren with her PA Line in, before transplant .

This is a post Lauren wrote while waiting for her heart:

I need to have a “PA line” in my neck with two special medicines helping my heart beat stronger to be considered a 1A top of the list. Well I ended up getting the line in on that Friday and things were looking great until about 10:30 at night. My mom was rubbing my feet trying to relax me so I could fall asleep, then all of a sudden my heart rate started going up. Long story short, the ordeal went on until almost two in the morning. My room was filled with doctors and nurses from the ICU, which one of the doctors tried to jiggle the line. Once he had done that, all hell broke loose. I think there was a kink or something because after that a ton of the medicine released and my heart rate went up to 158. I had the x-ray machine in my room, ekgs done, the whole nine yards. My mom was crying because you could literally see my heart beating through my 101 lb body. All of a sudden my nurse told me they were ready to sedate me… and put the shock stickers on me.. yup, they were ready to jolt my ass! Scary! Instead they ended up pulling the line and for the rest of the weekend I was bumped down to a 1B statis. It was a stressful weekend because we were unsure if I was going to be able to get the “LEASH” back in my neck. I call it a leash as a joke because I only have about a 3 foot radius to walk around with it in… Just imagine being 22 and basically being bed bound for 10 days at a time while all your friends are progressing and having fun with there lives, actually imagine being any age and told you had to deal with this.

This picture was taken a couple of months after transplant.

My daughter Lauren endured every complication that could happen during her recovery. It was a long road for her, but for the most part she had that pretty smile on her face. She didn’t want to show me her fear, nor did I. Together we stayed strong, because we were going home someday.

This was the day we left the hospital, after 5 months of recovery. She never gave up, she still had the trac in and also her feeding tube. But we are going HOME !!!!!!!

When we walked through these doors in March of 2013, never thought we would be walking out May 2014.It was a long road, but I told my daughter we would be walking out together, with what we came for. Thank you GOD…

20140512_175554

Lauren & Lynne

You can only donate your organs if:

September 15, 2015 Lynne1324Leave a comment

You can only donate your organs if:
you express a wish to donate your organs while you are alive, or the person closest to you (next of kin) gives their permissions.

Your organs cannot be removed if you or your next of kin have not given permission.
Organ donations come from people whose death has been confirmed while on a ventilator in a hospital intensive care unit (donation after brain stem death) or from people whose heart has stopped beating (donation after circulatory death). In some cases, people can donate their organs if they die in a hospital emergency department or are pronounced dead on arrival at a hospital.

Organs can only be removed from someone with consent. You can give consent by indicating that you want to be an organ donor if you die. The best way to do this is by joining the Organ Donor Register, as this makes it easier for medical staff to establish your wishes.
If it isn’t known whether you wanted to donate your organs in the event of your death, the person closest to you will be asked what they think you would have wanted and they can give consent to donation. That is why it is vital to let your family and friends know that you want to be an organ donor.
What is organ donation?

Organ donation is giving an organ to help someone who needs a transplant. The major organs that can be donated include the:
heart
liver
lungs
kidneys
pancreas, eyes and skin.
Organ donation saves thousands of lives, and can also improve the quality of life for many others. Between April 1 2013 and March 31 2014, 3,569 people had their sight restored by donated corneas.

Becoming an organ donor

The Organ Donor Register is a confidential database that contains the names and wishes of people who want to be organ donors. It helps doctors to understand and carry out your wishes.
If you want to be an organ donor, as well as joining the register, it’s important to tell your family so that they are prepared in case anything happens to you. Organ donation will be far easier and comforting for your family to accept if you have already discussed your wishes with them.
Many people gain a great deal of comfort from knowing that the death of a loved one has helped to save the life of another person.
Join the Organ Donor Register

http://www.donatelife.org

You can also sign up to the Organ Donor Register when you
fill out a driver’s licence application form online.

Please take a moment to think about this subject.

Lynne

Blogging 201 is here

September 15, 2015September 15, 2015 Lynne13247 Comments

Today’s assignment: consider what you want to accomplish with your blog. Write down three concrete goals.

Starting this post, I really didn’t have to think that long and hard about why I write my blog. My daughter had a heart transplant on December 30, 2013

Bringing awareness and education about organ donation.

Fact: 21 people die every day in the United States waiting for organs. Together we can lower that number by making that decision to become an organ donor. We were blessed, Lauren did receive her heart, but unfortunately many will not.

To be able to reach out to more people so I can use my site as a forum for helping promote events, fundraiser and to help support different causes.

To name one http://www.hopeforcian.com/

Double my number of followers

Lynne

Changes in eating habits

September 13, 2015 Lynne13242 Comments

My husband I started on August 31,2015 changing our eating habit. To my disbelief, (my husband never liked vegetable), if found some recipes and we have been eating healthy together. He says now he is excited when he comes home from to see what creation I have made for dinner tonight.

Eating healthy, now then start going to the gym.

I love finding new recipes, this one was a hit, but Lauren didn’t care for it

Spaghetti Squash with fresh tomato sauce

I love pasta, but now I want to cut it out off our diet. Perecft allturnative.

Cook a spaghetti, cut in half. Clean out the middle, coat with olive oil, cut up fresh garlic sprinkle it around. Bake for about 45 minutes, let cool for 10 minutes then take a fork to scrap the squash and it looks like spaghetti. I made my own fresh sauce, and there you have it. I was nervous, not sure if my husband would like it, but her loved it.

Just changing our eating habit to this date my husband lost 10lbs and i have lost 7lbs. We know at the beginning, we can loss weigh fast, so if we keep eating like this, then start going to the gym, we will achieve our weight goals. Not to mention feel so much better about ourselves.

Our journey is continuing, with positive results. Hum what’s for dinner tonight. If anyone has any good recipes please pass them on.

Thank you

Lynne

So many mixed emotions on this day, today’s my birthday, plus so many mourning this day

September 11, 2015 Lynne13242 Comments

When I woke up this morning, came down the stairs this is what I saw. I am so blessed. My sneaky daughter got up last night, after I went to bed and did this. Things like this make my heart melt. Love you Lauren

14 years ago, changed the way I feel about September 11th. I find it hard to celebrate when I know today so so many families lost loved ones on this day.

My husband asked me what I wanted to do for my birthday. He suggested going away for the weekend, taking me out for a nice dinner, whatever I wanted to do. I told him, a perfect birthday, I just want to stay at home and have a family dinner. I am so grateful for my family and our home.

We may have gone through so much in our lives, I don’t take things for granted anymore. Being at home with my family is the perfect day to me.

Please take a moment to remember all the innocent people who are no longer with us.

Love Lynne