I'm Sure They Knew I Wasn't a Cat

I was asked to go to a building I had never been before.  Inside the extremely large, white building people seemed so busy.  It scared me to see people hurrying about so quickly.   I felt a sense of urgency as we entered a large room where people looked worried, sad or depressed.  Life seemed to stand still here.  No one was talking at all in this room.  My parents looked worried as well.  There were several TV’s on but everyone seemed to be staring off into space, not watching the TV’s, including us.   This made me even more scared.  Why was I here?  My parents said something about tests being done.  I didn’t know what that meant.  The only test I knew was done is school.  This was not school, that was for sure. 

One by one I saw the worried people called up by someone in pajamas and they walked through a door.  I never saw them again.  After waiting forever, one of the pajama people called my name; we went with her through the same door.  I was worried we would not return either.  Where were we going?  They put my parents and I into a small room with a bed and I waited some more.  At least it had a TV I could change to whatever station I wanted.  I nervously watched, not really paying attention.  There was this tension in the room that I had never felt before. 

I waited some more.  My heart jumped at an unexpected knock at the door.  What was going on?  The nice, friendly lady said they had to take some blood.  I was so nervous; I barely felt the poke in my arm, then more waiting and staring at the TV, just like those people in the first room.  Another knock at the door made my heart leap.  They told me they wanted to take some pictures.  That sounded okay.  We went into a room with a big machine.  It didn’t look anything like a camera.   What was this thing?  They said it was a cat scan.  I’m sure they knew I wasn’t a cat.

What were they looking for?  I went through this tube thing, back and forth several times, and was told to lie still.  I wondered if they noticed me shaking.  I hoped they didn’t.  Then back to my room with the TV and more waiting.  I don’t really remember all the other tests, but I was no longer startled each time they knocked at the door. 

Then a pajama person and two people in white coats came into my TV room.  There is something inside of your body, they told me, that is not supposed to be there and we are not sure how it got there.  In my mind, I thought in the middle of the night, some evil person had placed a bomb in my body and now they were just finding it.

I actually dreamed about this a few nights ago.  I dreamed that two people in military outfits came to me with robots searching for a bomb inside my body.  I was so scared it was going to explode inside me.  I saw them looking at a TV screen, when suddenly someone said, “30 seconds.”  Everyone then left the room, and a guy came in my room with a big space suit like outfit.  All I remember is waiting… waiting… waiting for the bomb to go off.   It is almost as if this dream were coming true.   “Do I have a bomb inside me?”  I felt that same panicked feeling I had in my dream.   Why would someone put a bomb in me?

Another knock at the door brought me back to reality.  It was kind of fun to be wheeled in a bed upstairs to another room with a bed and a TV.  I was told they were going to make me better.  I did not understand what needed to be fixed.  My parents told me they were going to do an operation to take a piece of a mass out of me so they could look at it under a microscope.  I wasn’t sure what a mass was but my parents pretended like they were okay, but I could tell they weren’t.  What was inside me that would draw this much attention?  A few days later I heard them say the word, “cancer.” 

I was not sure what cancer was, but I knew it was not good.  I realized that one of my uncles died from cancer.  Was I going to die?  I did not want to ask this question to anyone for fear of the answer.  I just sat and worried about it everyday.  I wish someone would ask me if I worried about dying.  I wanted to talk about it but I was so scared. 

Dragonfly Wings for Emmalee

Whenever someone says, "Let me tell you a story," our ears perk up and we're ready to listen.  If someone says, "Have a seat and and I will give you step-by-step instructions,"  we aren't as prone to listen very closely.  Stories give us the ability to read between the lines, awaken our creative potential and are less threatening to our innate desire to want to choose our own destiny.  If the story is doesn't keep your interest however, you might as well go back to the step-by-step instructions.

I started Emm's story, Dragonfly Wings for Emmalee, with the statement, "When I saw Emmalee take her last breath, I was forever changed."  I have heard some rumblings from people about why I gave away the fact that Emmalee died in the first sentence of the book.  My answer is, I was inspired about that being the first line of the book.  I am not exactly certain why, and yes, I blew the ending to the book.

It is the non-traditional way to start a book like this, but I have had so many people tell me, they can't put the book down.  Why is that?  I think it is because there are information gaps that people want to fill.  The most important is, what happened?  The story I want people to know is, how did Emmalee live, knowing she was going to die?

She was full of faith but her story is not the typical cancer story that she was always positive and looked cancer in the face and laughed.  Fear of the unknown was overwhelming at times for all of us.  Emm's story is a raw account of what it is like to live with a bomb inside, not knowing when it is going to explode.  It is intense, but inspiring and will help you want to be a better person.  Love is the key to life and is the only thing that holds this world together.

Her story will strengthen you forever!

Thanks,

Steve (Emm's dad)

      

This is an article that a young man wrote wanting to bring awareness to Mesothelioma, a deadly cancer that is often times asbestos related.  I knew a co-worker who died from this type of cancer.  Below, Cameron describes what it is like to be a supportive husband for his wife who is battling this disease. 

You can visit his page at http://www.mesothelioma.com/blog/authors/cameron/  

Remaining Strong with a Cancer Diagnosis

My wife has said that she doesn’t know how I managed to survive while she was

suffering from mesothelioma. As her husband and caregiver, I did go through a lot

of hardship and emotional turmoil. I also learned several valuable lessons that I

hope to now share with others currently struggling through cancer.

Three months before receiving the diagnosis, our only child, Lily was born. Lily

brought so much joy and happiness to our lives, and the future of our new little family

seemed bright and exciting. However, in three short months, all of that happiness

would be ripped away, and replaced by fear and despair. The first time I heard the

words “malignant pleural mesothelioma” is still very vivid to me. I could only look at

my wife as she cried and wonder, “How are we going to be able to survive this?”

I would have retreated into myself and had a breakdown if the doctor had not

brought me back to reality with questions about how we would like to proceed in

treating this disease. We were given a list of different options, and were expected

to make decisions for our future in the face of this emotional struggle. It was on this

day that I began to learn how to make difficult decisions at the same time that I was

feeling entirely vanquished.

My days were filled with fury and anxiety after the diagnosis. My rage was out of

control, and I frequently used profane language when talking to people. I lashed

out at others angrily in the attempt to vent my emotions, but soon realized that my

outbursts were not helping our situation at all. After a little time passed, my feelings

came under control. I realized that I had a duty to be a rock for my wife and child.

Both of them needed me. There were times when I was feeling weak, but I managed

to remain strong in the presence of my wife. I didn’t ever want her to know just how

frightened I was. I was committed to being a source of strength, encouragement and

support for her. This was not always so easy to do, but I did my best.

Sometimes, I had so many things to do that I was completely overwhelmed. It was

up to me to take care of everything, including working, making the arrangements

for our travel and taking care of the baby and our pets. It seemed impossible in the

beginning, but I discovered how to prioritize my tasks. I also learned that I could not

do everything myself. I had to be willing to let others help us, and we were fortunate

to have several people who were willing to do just that. Once I let go of my pride and

learned how to ask for help, our lives became much easier.

Two months in particular were agonizingly difficult for me. After undergoing

mesothelioma surgery in Boston, my wife went to stay with her parents in South

Dakota to recover and prepare for the next phase of her treatment. Lily had already

been staying there during the operation, which left me home alone to work and take

care of our house. For the next two months, I would have to be apart from my wife

and daughter.

After work one Friday, I drove all night long through a snowstorm to see them. It

was a short visit. I got there Saturday morning and stayed until Sunday afternoon,

leaving in time to be at work Monday morning. It was a long, exhausting trip for not a

lot of time with them, but it was worth every second to see them. This was the only

time I saw them in those two months.

This experience taught me a lot about myself and my family. The best lessons I

learned were learning how to accept help from our loved ones and to never allow

yourself to regret or second guess the tough decisions that are forced upon you

by cancer. Rather, we learned to take comfort in our ability to make decisions at

all. They gave us some small amount of control over a situation that often seemed

completely out of our hands. After seven years, Heather is still by my side, and

cancer free to this day. I hope our story helps others continue to fight their own

battles with cancer.

The Lord tells us, in the Bible, that the first and great commandment is to love God with all you heart, soul and mind.  If this is the first and great commandment then no other commandment needs to exist.  If we loved him to our fullest capacity, His love would guide us to do His will.  If we Love Him then we will want to obey Him unconditionally because we trust him with all of our heart.  If we truly trust Him then fear dissipates, our worries dissolve and challenges are understood.   We then gain knowledge of his abundant love for us and realize that He would not give us a meaningless law to follow.  We would know that He is aware of our needs and that being obedient is in our advantage even when logically it may not make sense in our own mind.  If we love Him we will follow Him without wondering why we should obey any of His laws.  If we love Him with our whole heart, soul and mind why would we even question his ways or laws?

The second commandment is to love our neighbor as our self.  The Lord could have just said to love our neighbor and stopped right there, but he added the part about ourself.  There is equality in this statement.  We love our neighbor as much as we love ourselves.  For those who are more self centered, this means that you need to love your neighbor more than you are already loving yourself.  For those people who tend to take care of the world, it means you need to take a step back and love yourself a bit more.

The problem is that those self centered individuals are less likely to see that they are not loving their neighbor enough and those who serve the world before they take care of themselves are likely to feel a change in their behavior would be selfish.

There have been a handful of people who I have met who project unconditional love and healthy self-confidence in a complete balance.  We are human and may not achieve this total balance in this life but will have opportunities in the next life.  I can only imagine meeting Christ and feeling of His perfectness.  The peace and unconditional love that would come from that meeting would be amazing.  I firmly believe that Emmalee has had this opportunity and know that experiencing the Savior's love will be a spiritual and emotionally healing.        

Bike Across The Country

I met Navid Attayan on-line as a result of a YouTube video.  I was awed by his desire to help a cause and children who he has never met.  Selfishness seems to abide among the culture of our teenagers and college students.  It is the generation of, "What's in it for me?" I have actually heard college students say, "I'm not moved to action by seeing dying, bald kids."  I was pleased to hear of a young man who is thinking beyond his social life, studies, work and even family.  He is a senior at James Madison University and seems to have a huge heart.

This next summer he will be biking across the United States.  He will go from Harrisonburg, Virginia and arrive in San Diego, California.  He will do this in a very short period of just 8 weeks.  His desire is to raise funds for Neuroblastoma, a childhood cancer, that mainly strikes kids under the age of two.

This is an ambitious effort and he needs funds to support his ride but also ultimately, he wants what I want, a CURE for childhood cancer.  I am asking that you support him by either helping fund his effort directly or during the week from 11/12/12 through 11/19/12 go to my website Dragonflywings4Emmalee.com and purchase a book or shirt and I will give 50% of the proceeds to his cause.

Here is his page  http://www.gofundme.com/projekt3k and Facebook page https://www.facebook.com/ProJeKt3K  

Please join with me in this great young mans effort.

Thanks,

Steve

Stories...Nordstrom's Customer Service

When I hear someone tell a story, I am usually interested.  I was listening to an audio book about marketing and a couple of customer service stories shared, have been rattling around in my mind.  Stories are powerful ways to teach and are the things people often remember, even more than facts, rules or step-by-step instructions.  The author shared how Nordstroms is known for its customer service and gave some examples of employee excellence.  How did these employees learn to act this way?  Why did they go above and beyond?  Does it hurt or help the bottom line of the company to act this way?

In one of the stories a Nordstrom customer brought back some tire chains that apparently were not even sold by Nordstrom.  I have done that before, not on purpose, but brought something I bought back to the wrong store, only to hear, "I am sorry sir we don't sell those shoes here." Then it hits me, I bought them at that other store.  "Well, I guess I will go shop at the other store since I have to go there anyway," I think to myself.

Well, this Nordstrom employee returned the tire chains and gave the customer a refund.  Nice!

I have heard that one of the mandates from Nordstroms during training is to, "Use good judgment with customers."  Then they tell stories like this one.   Talk about trust and believing in your employees.

In the second example, one of the Nordstrom employees was out in the parking lot warming up the car, in the dead of winter, for a customer.  No one has ever warmed my car up for me.  I am still waiting for this to happen.  Maybe I need to shop at Nordstroms.

When you train your employees through stories and examples like these, it feeds the creative side of your brain and allows your mind to naturally fill in the gaps to find your own solutions.  The wheels in your mind begin to spin and you go through different scenarios and find out how you can incorporate these stories into your daily work.  When the time comes to act on their own the Nordstrom employees can recall the story and use good judgement to guide their actions.

On the opposite end there are companies who train with step-by-step instructions.  1.  Smile and look the customer in the eyes.  2.  Greet them with a happy hello.  3.  Ask them if there is anything in particular they are looking for. 4.  Be available for them if they have questions.  5.  Be ready to ring them up.

Stories tend to help people rise to the occasion and allow them think independently,  and then decide how they might do something similar.  Step-by-step instructions tend to put people's creativity in a box and stifle personal growth and creativity.

I love to share stories with clients when doing therapy and when I am doing seminars or speaking engagements. More often than not you will retell a story to someone versus step-by-step instructions.

My hope is that Emmalee's story will send you mind on a creative journey and ideas will flow as to how you can love more deeply, serve others more diligently or just gain new ideas as to how to be a better person.  What would you do if you were diagnosed with cancer?  Would your thoughts turn dark?  What if my child were diagnosed with a terminal illness?  How would she cope?  How much information would you share with your child about their diagnosis?

I have received so many e-mails and feedback from people who have read Dragonfly Wings for Emmalee and been changed permanently.  I know you will be a different person after you read her story.

Steve Havertz, LCSW, is the author of Dragonfly Wings for Emmalee.  He has been a licensed counselor in the mental health field for over 20 years.  The end of the book has helpful advice about how to cope with a loss and what not to say to those grieving.  It can be purchase on-line at amazon.com and on-line or at stores Barnes and Noble and Deseret Book, bn.com and deseretbook.com.         

 Dragonfly Wings for Emmalee

Chapter 14 “Mom, I think this is serious”

On Tuesday September 29, 2009 Emm called me on my cell phone from the bathroom in our home.  I was at work and not in a position to leave at the moment.  My dad was home watching her because she wasn’t feeling well.  For days she had been having more pain than usual, her stomach had become more distended and she was more tired than usual. 

She kept saying she felt like her stomach was, “stretched out”. 

We had no idea that her heart was shutting down. 

She took the phone into the bathroom, shut the door and I heard her crying.  My sweet Emmalee with a trembling voice said, “Dad I hurt so bad I can’t stand it.” 

“Go and get grandpa,” I tried to convince her as calmly as possible. 

“No, I can’t!”  Her voice was still shaky. 

“Why” I said, feeling so powerless.  

“I just can’t, I hurt too bad.” 

I instructed her to hang up the phone and not to answer when I called back.  I called back several times trying to get a hold of my dad.  He finally picked up and went to check on her in the bathroom and found her on the floor.  I heard her screaming in the background and became sick to my stomach.  Here my little girl was in pain and I wasn’t there. 

I called Kara at work and she immediately headed home to pick her up.  Kara called Emm while she was driving, talked with her, which helped her calm down. 

While on the phone, in a calm tone Emm said these chilling words, “Mom I think this is serious”. 

Emm’s pain had lessened and she lay on our bed.  Kara walked into the bedroom and Emm seemed to be doing a little better. She debated whether or not to wait until the next day for our scheduled appointment.  She decided it would be best to take her in to get her checked out at the oncology clinic.

While at the clinic, Emm lay on her right side in one of the waiting rooms. When she sat up Kara noticed that Emm’s eye was swollen.  This was the beginning of some severe Edema.  

They decided to admit her overnight to get her stabilized and feeling better.  They didn’t even think it was serious.  She seemed okay other than some abdominal pain, swelling, and her stomach being distended.  They were not going to let her eat because they wanted to do a CT scan.  She cried and cried about not being able to eat.  Food was her favorite thing and she was very cranky and upset when she could not have it. 

They finally decided to wait until morning to do the scan and at 8:30pm I arrived at the hospital with some chili from Wendy’s.  This would be her last craving and last meal.   She took a few bites and shortly after threw up.  This was not atypical so we were not alarmed. 

            They started giving her blood, plasma and fluids because her levels were all so low.   Emm fell asleep ok, but did not get up at all during the night to go to the bathroom.  She woke up at about 5:30am complaining that her neck was hurting.  I thought she had kinked it during the night because of the weird hospital pillows.  I fluffed it for her and she went back to sleep.  I had no idea her body had started to shut down.

The docs came in and were worried that she had not urinated.  Her neck and face were swollen.  Her face looked misshapen.  Her heart rate was at 150 beats per minute, but they could not find a blood pressure.  All of a sudden there was a flurry of activity in her room.  They were unplugging monitors, rearranging her IV and getting her prepped for the ICU.  One of the interns asked me if I requested life saving measure to be taken on her.  This question took me by surprise, as I didn’t realize it was potentially this bad. 

I responded, “By all means do everything possible to save her life.”  Not knowing that very soon my opinion would be in stark contrast to that one. 

She arrived in the ICU in a matter of minutes.  She was not fully conscious.  There was a doctor barking orders to a team of seven or eight other nurses and other staff.  I was in shock.  I became very worried when this same physician told me she could go into cardiac arrest at any moment.   She also asked me if I wanted life saving measures to be taken. 

I again answered, “yes”. 

The doctor started telling me that a decision needed to be made about intubation. (Putting a breathing tube down her that would breathe for her.)  She informed me that they would most likely need to do this very soon and this was a very delicate procedure that could cause her to go into cardiac arrest.  

I knew she was in bad shape when they had to put an IV in and she hardly whimpered.  Also, they put an arterial line in her without a whimper. 

This took several tries in her hand that did not have the IV.  After that failed they tried several times in her femoral artery before they were successful.   I sat with her and held her hand through most of this, but she was hardly aware of much. 

They also put a catheter in without protest.  They stabilized her blood pressure with some Dopamine and gave her adrenaline.  They had her on a breathing apparatus, which basically forced air into her lungs.  It was one step short of intubation.  They came in to do another X-ray of her chest and later an echocardiogram.  These would give us some horrible information that would force us to make one of worst decisions anyone could be asked to make. 

The X-ray showed that one of her lungs was almost full of fluid and her belly had a lot of fluid in it as well.  This is why her belly was becoming distended.  Her eyes were swollen shut and her face looked distorted because of all the water retention.  Since the X-ray the night before things were much worse.  The echocardiogram would show and even more ominous picture.

A theory was that the chemo drugs she was or had taken damaged her heart.  Her heart was functioning at ten percent infarction.  It was not able to adequately pump blood to her body.  She could arrest at any time.  They also used the word Septic.  They were pumping her full of antibiotics for an unknown infection. 

They did not want to drain the fluid in the lung or belly for fear it would cause her to have an immediate cardiac arrest.  They told me that if they drained the fluid more fluid would immediately rush in and possibly kill her.  There was really no good news at this point and there were no good options. 

 

WEDNESDAY, SEPTEMBER 30, 2009 12:21 PM, MDT

Prognosis is very bad.  She is in congestive heart failure.  Two heart valves are leaking into her lungs and her heart is functioning very minimally right now.  She is not very coherent.  We are calling family together to be with her.

They will need to intubate her today because of her heart failure, which means they put a breathing tube down her to make her breathe. She will then basically be sedated.  Intubating her may put her into cardiac arrest.  We need to decide what direction we want to head.  It does not look good right now either way we go.  

The doctors needed to know ASAP if we wanted to intubate her and if we wanted to try to resuscitate her if she went into cardiac arrest.   I wanted family to be there so we could make that decision together.

Family started arriving at about 12:45pm.  A neighbor showed up around 11am stating she just felt like she needed to be there.  She brought some food but I had no desire to eat or drink anything. 

We gathered into a room as family and various medical staff.  In this meeting we had the ICU head physician, our oncologist, a MD who specialized in these types of decisions.  Kara, Matt, Krystal, my parents, Kara’s parents and myself.  The medical staff did not lead us in any direction, but laid out for us the pros and cons of life support versus no life support. 

The factors we weighed were: 1.  Her pain, sickness, discomfort, throwing up, diarrhea, fatigue and inability to fully enjoy life.   Over the last year her health was slowly deteriorating. 2.  She could be a lot worse off if they did happen to pull her through.  3.  There was a good chance that as they tried to intubate her she would have go into cardiac arrest and die.  4.  If they tried to drain the fluid in her lungs and belly she could go into cardiac arrest and die.  5. Her heart may have permanent damage.  6. A liver transplant was still a long shot and she would need a healthy heart to have a transplant.

The pros were that we would have Emm a little longer but at what cost to her?

Our main question, during that meeting, to the medical staff was if they could keep her comfortable until she passed?  They assured us of this, but this did not turn out to be entirely true.  It is very difficult to watch your little girl in pain and uncomfortable during the last moments of her life.

Right after this meeting we knelt down, as a family, in the conference room and said a prayer.  We expressed our love for Emmalee and how much we appreciated the time we had with her.  We asked for confirmation that this was His will and that He was truly calling her home.   It was an emotional prayer for us all.  I was thankful for the opportunity to express our love and concern for Emmalee to our loving Heavenly Father. 

I think we all felt that it was the right decision and that the Lord was truly calling her home.  Even though we knew it was her time to go it did not make it any easier, nor did we know how long she would be with us.      

We went into her ICU room and prepared to give her a Priesthood blessing.  This is the absolute worst memory I have of this day.  It still makes me feel sad to know the impact this had upon her in the ICU.  I intellectually understand, and understand the spiritual workings of it, but I did not like being in that position.  Yet I would not have wanted anyone else to tell her she was going to die. 

Emmalee trusted me and I had to be the one to break the news to her.  I didn’t want to but what better way to do it than in a blessing while being directed by the spirit as to what to say.

She was hooked up to so many tubes, monitors and devices that it was difficult to get around her bed to lay our hands on her head.   There was really only room for one person to be by her comfortably.  Kara’s dad, my dad and I squeezed in there.  A few machines had to be moved slightly.  I just wanted to get it over with.  I knew what her fate was and I knew that Emmalee needed to know.  I thought it would be best to have the help of the Lord to tell her it was time to pass to the other side.  I did not know if she were even lucid enough to hear the blessing.  Her eyes were swollen shut and her throat was swollen to the point where it was difficult to talk.

We laid our hands upon her head and the first words out of my mouth were, “Emmalee this will be your last earthly blessing.”  I could not believe what I was saying.  I started to break down and remembered telling her that she was going to cross to the other side soon. 

As soon as I said this she started shaking her head violently back and forth in disagreement.  I knew that feeling coming from her because we had experienced it many times.  My heart was broken, my concentration gone.  I had no more to give her.  I had done what I was prompted or needed to do.  I had called upon the administering angels to come and be with her.  Maybe she needed to hear this at that time to prepare her for this transition.

I am still angry with myself for this.  I find myself regretting how I told Emm she was going to die.  If I had the opportunity to do it over again I would have talked to her first and told her that we loved her so much, but it was her time to go.  I would have just talked to her first then I would have given her a blessing so that she would not feel alone of scared.  I still beat myself up over this.  There are times I feel the anger bubble up inside me and I want to punch myself.  I scared Emm needlessly.  I knew I had to tell her she was going to die, but just wish I would have done it differently.  I feel so bad that I scared her like that.  

The medical staff gave us the choice to let her stay in the ICU until she passed or to take her up to the oncology floor.  We were given the impression that once they unhooked her from the medical devices that she would go pretty quickly. 

After the blessing I kept thinking to myself, “Please just let her go quickly.”  As I would learn she still had a mission to complete.  They pulled her arterial line out that was measuring her blood pressure.  That was supposed to be very painful.  She didn’t whimper.  They pulled her IV out of her hand again without a sound from her.  They stopped the massive doses of antibiotics and the Adrenaline.  They kept her on the Dopamine to keep her blood pressure stable until she could get upstairs.

Around 4 or 5pm, Dr. Bruggers came to say goodbye to us.  I think she knew there was a good chance Emm would die overnight and she wanted to give us her support before she left for the day.  Earlier I had asked her what decision she would make if she were in our shoes. 

Her initial response was quick but sincere and soft.  “I don’t know what I would do.”  I could tell that she was personally affected by this situation.  However, later that day Dr. Bruggers told me given the same set of circumstances she would make the same decision we did.  It was a source of comfort to know this and I believed her.  I did not feel she was just telling me this to make me feel like our decision was right.

Steve Havertz, LCSW, is the author of Dragonfly Wings for Emmalee.  He has been a licensed counselor in the mental health field for over 20 years.  The end of the book has helpful advice about how to cope with a loss and what not to say to those grieving.  It can be purchase on-line at amazon.com and on-line or at stores Barnes and Noble and Deseret Book, bn.com and deseretbook.com. 

How to Market Your Book

I have certainly not hit the big time yet, but I have gone from a self-published author to having my book in book stores.  I have been able to land some impressive TV and radio gigs.  There have also been some newspaper articles written about "Dragonfly Wings for Emmalee".  (Visit www.DragonflyWings4Emmalee.com for more specifics)

What I have learned so far.

1.  I thought, after my interview with Carole Makita on KSL-TV, an interview on KSL radio, being on the morning news with Fox13 and being a guest on The Morning Zoo 97.1 in Salt Lake City, that my book would be a hot commodity.  It sold a couple of copies after each of those interviews.  The same thing for all of the other press that I have received.  Do you go out and buy a product after just seeing or hearing about it one time?   Usually, people need to hear about it and see it many times before they are convinced to purchase it.  Press builds your credibility more that it creates sales.

2.  To create a "World Wide Rave" you have to be different and do something that is out of the ordinary.  If someone has already used a particular marketing strategy, it is not likely to capture attention.  Who was the second man to walk on the moon?  Not many people know because second does not get the attention.  I spend hours trying to think up new ways to get peoples attention without overtly selling.  Trying to be the first person to come up with that attention-grabbing creative idea is the hardest part.

3.  You have to find a distributor in order to get your book into bookstores.  As a self-published author, you will not be able to sell your book to bookstore on your own.  Between the distributor and the bookstore they take half of your profit.  Getting your book on Amazon is a lot easier that getting your book in a bookstore.

4.  In order to get press build relationships with media people.  Join conversations on Twitter and Facebook.  Send them relevant and good information about potential stories.  I have done this many times and got lucky the few times.  I still send out information periodically, most of the time receiving no response.

5.  Find the problem you book solves for people and use that as your hook.  Emmalee's story gives people inspiration, pushes parents to love their children more, helps others with cancer feel more normal, helps people know what to say to the grieving, and helps people grieve a loss.  Being a counselor allows me to help others solve some of these problems with, hopefully, some credibility.

6.  Know who your potential buyers are.  I have learned that a higher percentage of my readers are women who have children.  I would love more men to read the book, but I think they are too afraid of crying.  Market to your audience.

7.  Create memory hooks that will trigger people to think about you and your book.  Naturally, a dragonfly often times reminds people of Emmalee or her story.  It has been really nice to have people send me photos, pictures of dragonfly products, or tell me how they were strengthened by seeing a dragonfly.  Find images or items that will remind people of your book.

8.  Once your book is in bookstores go and talk to staff and tell them about your book.  They often recommend books to their customers.  If they put your face to the book and story they may just do some  marketing for you.  I took some t-shirts into Deseret Book for the staff to have.  Hopefully, that will help them recommend my book to their customers.

9.  When you walk into a bookstore and see all the competition it is very humbling.  It is hard work and you have to try to do something everyday.  Blog, e-mail, FaceBook, t-shirts, sending information to press, give-a-ways, and mostly trying to find ways to be the first to come up with the creative idea that makes your book "tip".  I have not found this yet, but am still working on it.

"Dragonfly Wings for Emmalee" is available at Barnes and Noble, Deseret Book and Amazon.com  It is available in e-book form on www.bn.com

Steve Havertz, LCSW has been in the mental health field for over 20 years and is an expert in grief and loss.  He also advocates for pediatric cancers and speaks on these two topics.

   

Things NOT to Say to the Grieving

It is always a bit uncomfortable when you meet up with someone who has just experienced the death of close family member or friend.  Many people just avoid the topic all together or just avoid the grieving all together.  Some are afraid of the feelings that the grieving might express.  Emotions can be uncomfortable to deal with and you may wonder if you have ruined their day if they cry.  You haven't!

I still relish in the moments when someone asks me about Emmalee.  Even though I may tear up talking about her, it still helps me cope with her loss.  It also lets me know that people have not forgotten her.  Don't worry about the emotional response.  If your up to it ask more questions and just listen.  Just don't say some of the phrases below.

One of the phrases I dislike most is, "She is in a better place".  The implication is that it is okay that she died.  It is similar to saying, "God must have really needed her on the other side".  Which is another phrase I have come to abhor.  I am sure Emmalee is at peace and happy, so there is no need to tell me what I already know.

Unless you know someone well keep it safe.  "I am sorry for your loss", "My condolences", "I love you", "Lets go take a walk", "My thoughts and prayers are with you", "Tell my your favorite memory", and "Here is my number" are safe things to say.

Some other things to avoid saying, "She is your angel now".  I would rather her be my daughter still, than my angel.

"You must be strong now".  No, It is okay to acknowledge my feelings and express them.  Anything that suggest I should push my feelings aside is not helpful.

"She is out of pain now".  Yes she is, but it is not the right thing to say.

Bottom line is keep it safe, but if you know the person well you can add to the safe things according to their belief system.  Would you say to a grieving Buddhist, "I know she is with God now"?  Know what a person believes before you go outside of the safe things to say.

Steve Havertz is the author of "Dragonfly Wings for Emmalee" an inspirational book about the life and death of his daughter Emmalee.  At the end of this book he shares his personal and professional experiences with loss and give advice to those who are grieving.  He has been a licensed mental health therapist for over 20 years and an excellent speaker and motivator.     

 

How to Cope With a Loss

HOW TO COPE WITH A LOSS

Do you have a fear or phobia?  Maybe a fear of snakes, heights, public speaking or spiders?  Indiana Jones had a fear of snakes and faced that moment when it was either face his fear or die.  Rarely are we placed in such extreme circumstances.  What do you avoid in order to not have to deal with your fears?  Often the things you avoid might be very subtle.  You may avoid getting on ladders, if you have a fear of heights.  You may slump in you chair anytime the boss is asking for volunteers to do a presentation.  The day will come in which you may be forced to face these fears, so it is in your best interest to work at them.  Facing any loss has the same dynamics.

Do feelings of grief just go away or do you need to work at it.  Do you avoid triggers of the loss?  You will experience them anyway at some point so it is best to deal with them sooner versus later.  

For me there are many triggers to Emm's death.  I went inside Primary Children's Hospital for the first time since her death several months ago.  I went to deliver a book to the out patient clinic, where Emm was treated, while she was sick with cancer.  A flood of memories and emotions took over.  I tried not to think about it, but it was like being in a plane that is taking off and not noticing the sound of the jet engines before take off.  It almost seemed as if my thoughts were that loud in my head.  When the receptionist asked if it was difficult being in the clinic, the emotions just started spilling out.  The memories of her chemo, her hospitalizations, being in the ICU and her death pressed down upon me as if extra weight had just been added to my back.  I wonder if I actually looked as if I were slumping.  

I could have just avoided going up to the hospital, but as some point I would have to face those feelings anyway so why not just do it?  After a loss we all will have triggers to face.  It may be a song, a place, a person, certain memories, or certain objects.  The list of triggers could be endless and once you face one another may pop up in its place.  

Instead of avoiding our fears or triggers relating to a loss, face them.  You will be glad you did.  That way you won't be put in a position of having to avoid people, places or things either consciously or unconsciously. 

Steve Havertz is the author of "Dragonfly Wings for Emmalee" an inspirational book about the life and death of his daughter Emmalee.  At the end of this book he shares his personal and professional experiences with loss and give advice to those who are grieving.  He has been a licensed mental health therapist for over 20 years and an excellent speaker and motivator.     

CHOICES AND CONSEQUENCES

CHOICES AND CONSEQUENCES 

If you choose to put your hand on a hot stove your get burned.  There is an immediate reinforcer not to do this.  If you use drugs the immediate reinforcer is generally positive.  You feel a sense of peace, euphoria, well being or just numb from the world.  Once your hooked then the negative consequences set in but your too hooked to care.  In fact, you start to believe that the negative consequences are not so bad and until a bottom is hit (sometimes it takes hitting the bottom over and over) change will not occur.

There are many daily decisions that can fit into this category.  Pornography, food, sex, alcohol, language, attitude, attire... the list could go on.  If there were immediate negative consequences to these behaviors then people would not do them.

When an adult contracts AIDS for the most part and informed choice was made.  A risk was taken and consequences resulted.  The spread of AIDS is sad and those who have HIV deserve treatment.  However, how do we measure how much attention and money is given to a particular disease?  When the government gives $254 million to AIDS research from a finite budget that is getting smaller and only gives $26 to ALL pediatric cancers, what message is that sending?  I believe it is sending the message that children are not our priority.  Children and their disease are not worth looking into.  Did any child ever make an informed choice to get cancer?  Did risky behavior result in a child being diagnosed with cancer?  Did a child's risky behavior or lifestyle cause him/her to be diagnosed with cancer.

Every day 46 people die from AIDS and everyday 4 kids die from cancer in the United States.  I guess that is how the National Cancer Institute (NCI) makes there funding decisions.  

A few comments and questions:  AIDS is not a cancer but money is taken from a budget designated just for cancer research.  No new drugs have been developed for pediatric cancers for around 20 years.  Funding for pediatric cancers have gone down every year since 2003.  Is an innocent child's life less important than an adults who made and informed decision?

I say instead of relying on statistics to decide funding for diseases lets rely more on our heart.  This may upset people, but I believe those who have made informed choices and get diseases deserve less funding than those who are innocent victims.  As we look to fund research for disease part of the equation needs to be related to lifestyle and choices.  There are natural consequences to things and this would be a natural consequence to making wrong choices.  What do you think?      

10 Myths About Grief and Loss

10 Myths about Grieving

Myth 1 “Get over it” as quickly as possible

“You should be done grieving within a few months to a year and an half.”  If you have been told this, you have been set up to be frustrated.  It’s like telling someone not to miss their loved one anymore. 

             

Myth 2 Sadness for a few months after a death is okay but beyond that…

Are you crying again? Why are you so irritable?  You’re not over it yet?  There is no reason to feel guilty?  What is wrong with you today?  These may be questions from people who don’t understand that any feeling is okay as long as it doesn’t consume you.  There is no wrong or right way to grieve.  

Myth 3 There are predictable stages you will go through after a loss

In 1969, Elizabeth Kubler Ross developed the stages of grief.  I believe this came about as a result of people wanting to know what was ahead after a loss.  Similar to when we have surgery, we want to know how long our recovery will be.  This is a dangerous mind set when it comes to loss.  Everyone is different and we can’t put feelings or thoughts into averages and find a middle feeling or thought that everyone should have.

Myth 4 If you don’t talk about your feelings there will be negative consequences

Some may feel the loss very deeply others may not.  Some people need to express their feelings and run the risk if they don’t, they will end up with physical and emotional problems.  We are not sure yet why unexpressed feelings can cause problems for some and not for others.

Myth 5 If you have feelings of grief years later there is something wrong with

It is ironic that we accept the grieving that takes place every year on 9/11, but if someone else is having a hard time with a loss, years later, then society tells them to move on or there is something wrong with them.

Myth 6 If someone is smiling and happy it means they are “over it”

Just below the surface there still may be pain.  For many the pain seemingly comes out of nowhere.  There can be certain smells, thoughts, places, people that trigger very intense emotional pain.

Myth 7 There are predictable coping skills that are a for sure bet

What helps one person may not help another.  Experiment with what works for you and write down your what seems to help.

Myth 8 All losses create similar grief reactions

The loss of my wife was very different than the loss of my child. Suicide, accidents, natural disasters, death of a friend, co-worker can produce very different grief responses from person to person.

Myth 9  If you talk to someone about their loved one who has passed and they start to cry it means you have made them feel worse and ruined their day

I still love it when people share memories with me of Emmalee, my daughter, or tell me that they were remembering her.  I cried during some of these interactions, but it did not mean I didn’t want to hear what they had to say or that it made me depressed.

Myth 10 If I grieve properly I won’t miss them any longer

Missing someone you lost is just part of death and may still exist the rest of your life.  Birthdays, holidays, family gatherings, certain music, the anniversary of their death, certain objects and even certain food are among a few of the things that might cause you to miss them.  This type of reaction does not mean there is something wrong with you.

Steve Havertz is a Licensed Clinical Social Worker who has been in the field for 21 years.  He has experienced the loss of his wife and daughter.  He is the author of Dragonfly Wings for Emmalee, an inspirational speaker, and helps individuals and groups work through their own grief.

What Was the Last Thing Your Loved One Said to You?

After a loved one dies we search through our memories and try to find the last thing they said to us, the last time we saw them, the last meal they ate, the last positive memory they may have had, or the last time we told them we loved them.  With Emmalee, we had a unique opportunity to try to commit certain experiences, things we did together or things she said to memory, so that they would stick.  I would hold certain experiences in my mind a few seconds longer and tell myself to, "remember this."  It has almost been three years since Emmalee died and even though I have forgotten what her laugh sounds like, I still have certain memories that have stuck.  

Maybe we need to do more "memory sticking" not just in case someone close to us dies but because memories just plain fade over time.  One way to do this is with photos.  I can remember more about experiences with Emm when I look at a photo.  Another way to do this is by writing down specific memories in a journal. There are several times I remember telling myself, "Hold this for a few precious more seconds to let this memory stick".  (Sorry for the shameless plug of my book here, but you will have to read the book for those memories)  For this post I wanted to tell you about our last vacation together.  We were at Zion National Park almost exactly three years ago this month.  We were out to breakfast on my birthday, when Matthew took this photo of Emm and I together at the Bumbleberry Inn in Sprindale, Utah.  It is as if I can feel her cheek against mine still to this day.  It is a great memory that I will never forget.  Emm swam for the last time here as well.  She loved swimming, but could not swim because of the double Broviac tube that went directly to her heart.  I rigged something that allowed her to be in the water for just a few minutes and she loved it.  Seeing her happy in the swimming pool was a tremendous joy.  Oh, and this was the trip that she threw up all over the table at the Vietnamese restaurant there.  Not funny at the time, but I smile when I think about it now.  

Now do your own memory sticking.  

       

I can predict your future

“How long does she have to live?”  I found myself sucked in to wanting to ask this question when Emmalee, my nine-year-old, was diagnosed with liver cancer.  Do we always get an accurate and helpful answer when we ask medical professionals to predict the future?  I wanted to know what the averages were, but didn’t want to be pushed into some timeframe or worse have Emmalee believe she only had a certain amount of time left. 

In my book, “Dragonfly Wings for Emmalee”, I described an experience I had with a doctor who barged into Emmalee’s hospital room and proceeded to tell me, in front of Emmalee, that she had six months, a year, two at the most to live.  Needless to say I was very upset about this and I asked to the doctor to step outside.  This interaction occurred right after her first, all night IV drip, of chemotherapy.  It was obviously totally inappropriate to do that in front of Emmalee, who was only eight at the time.  Second, does any doctor have the right to be that specific in telling a patient when they will die from and illness?  Is it in any doctors or patients best interest to be that specific about their future?   

While working as a counselor in the mental health field for the last 20 years, I would get asked periodically to predict what the grieving process would look like after a client experienced a loss.  I remember one woman who was struggling with the loss of her daughter, telling me that her therapist told her that it had been a year and a half since her daughter passed and she should not still be grieving.  I have had a number of clients tell me similar stories of counselors telling them how long they should grieve for and how they will and should feel throughout the grieving process.

In 1969 Elizabeth Kubler-Ross MD tried to answer these inquires about grief and loss with specific stages that people might go through while dying and then after a loss.  Denial, anger, bargaining, depression and acceptance are the five stages she introduced to the public.  I think in part these stages came about as a result of wanting to help and predict for people what might lie ahead for them while dying or after a loss.  It also gave therapists a way to try to build rapport with their patients by telling them, “I know what lies ahead keep coming back and I can guide you through these stages and figure out how your emotions fit into these stages.”

 

I think there are two problems that are going on here.  One is that people who are in the helping professions want to feel intelligent and have all the answers so they get sucked in to offering answers to these prediction questions.  Second, consumers of health care are asking for specific answers that might not be readily available.  As consumers we need to not get sucked into asking for predictions of the future but asking more specific questions like, “What have other people who have lost a child experienced and how did they get through it?”  Not how long will it take to get through the grief.  If a person is told a time frame it may hinder potential growth or if their not done grieving then it could cause them to feel something is wrong.

Before my wife died in 2003 and then my daughter in 2009, I used to teach clients about the stages of grief.  It was all that I knew and had been taught in graduate school.  I will never again offer up these stages to clients.

  

Why does it hurt people to predict so specifically what stages they may go through after a loss?  It may provide false hope for their future or could provide a dim picture of their future, depending on their psychological makeup.  It can stifle the client’s emotional growth.  What if they have panic and anxiety as their paramount feeling they experience and they are told they will have anger and depression?  What if they get to acceptance and don’t stay there?  There could be a hundred what ifs here.

How should doctors and mental health professionals handle these type of inquires?  First let me address doctors.  Let go of your ego.  You don’t need to pretend that you have all the answers and that you can look into your crystal ball and predict the future.  I think you believe that it makes you feel more intelligent and you believe it helps your clients trust you if you get their future right.  It does the patient a disservice and may make you look very bad if your prediction doesn’t come true.  To educate a person who has just been diagnosed with a terminal illness or just got out of knee surgery, about the average recovery times or averages as far as how much time others have lived and word it in way that is not an inevitable prediction  is enough.  (Along with all the post op do and don’ts)

 

For mental health professionals, share with your clients that any emotions are okay to experience.  Even if a client doesn’t feel sad or any feelings at all, after a loss, it is okay.  Ask your client what feelings they are having and normalize these for them.  I like clients to find their metaphor.  Ask them what comparison or even a song that might best describe what they are going through.  It helps them soul search a bit and then allows them to use this metaphor to help others understand them a bit better.  The metaphor may change over time.  I described my feelings of loss like falling off a cliff.  The feelings can come on very quickly and can be very intense, until I deploy my parachute.  People can relate to that feeling of panic of falling off a cliff because you can imagine what this is like or most of us have had the dream of falling off a cliff.  For more coping skills and thoughts about grieving a loss they are outlined at the end of my book, Dragonfly Wings for Emmalee.

For us health care consumers, we need to not expect health care professionals to predict the future and need to stop asking them to do so.  We can ask for averages, but need to be careful not to believe this is a prediction.  Ask more here and now questions i.e. Are these feelings or pains normal?  What can I do to lessen the intensity of these feelings or pain?  Don’t ask anyone to predict the future!

Does the pain ever go away?  I was going through some photos and found this one of Emm and her friends taken a few months before she died.  She looks good and healthy, other than the obvious sign, her baldness, she has cancer.  Tears still flow at times, but to some it means I don't have faith in God or the atonement of Christ.  Just because I miss or still cry, does it mean I don't have faith?  I truly wonder if only those who have lost a child understand the pain that can come on so suddenly and feel like and emotional knife is stabbing into my mind.  I don't focus on the pain, but it comes quickly and can leave just as quickly.

There are the cool reminders that sometimes cause a broad smile to sweep across my face and even laugh.  I love those times.  I don't know if I would have accepted the range of conflicting emotions if I had not been a counselor for 20 years.  I may have been one of those people thought to themselves, "Wow, this person is dwelling way too long on this loss of his child.  He needs to get over it." Interesting how life experiences allow us to gain such depth into issues that were never even conceptualized in our youth.  I would have never even imagined I would have experienced the things I have when I was in my youth enjoying sports, food and fun.  However, I realize that life is what we make it.   

http://youtu.be/D_sElzBtHvg

Emm's friends express their feelings about losing her.

Why are pediatric cancers the forgotten by our society? According to a Forbes Magazine article breast cancer got $584 million dollars for clinical trials, even AIDS got $254 million for research. Guess how much ALL pediatric cancers got? Only $26 million. AIDS is not even a cancer but the National Cancer Institute (NCI) gave $254 million for research out of a finite bucket of money. Why???

Why are childhood cancers swept under the carpet? We hear in the news how the GSA spent millions on vacations and gifts for government employees over the years. These super pacs are spending millions on silly TV adds to assure their candidate looks "electable". How many billions of dollars are being wasted on unneeded wars?

Pediatric cancers are the number one disease killer of our children and second only to accidents as the overall killer of our kids.

Am I mad about this? When I found out I was shocked and stunned of the neglect we are showing on this issue and our children. Is it just because there are no celebrity children who have cancer? Do we pay that much attention to issues just because a celebrity tells us to?

I am not a celebrity but a dad of a child who died from cancer. Maybe if we had paid more attention to pediatric cancers she would be alive right now. Why are we not shouting this from the roof tops?????

My first live TV interview. Thought it went pretty well.

http://fox13now.com/2012/04/03/author-pulls-from-personal-loss-to-help-others-with-grief/

Emm's book will be in bookstores in the next few weeks

A reminder that we are all Dragonflies.

Eulogy Story : Dragonfly

Once, in a little pond, in the muddy water under the lily pads, there lived a little water beetle in a community of water beetles. They lived a simple and comfortable life in the pond with few disturbances and interruptions. Once in a while, sadness would come to the community when one of their fellow beetles would climb the stem of a lily pad and would never be seen again. They knew when this happened; their friend was dead, gone forever.

Then, one day, one little water beetle felt an irresistible urge to climb up that stem. However, he was determined that he would not leave forever. He would come back and tell his friends what he had found at the top. When he reached the top and climbed out of the water onto the surface of the lily pad, he was so tired, and the sun felt so warm, that he decided he must take a nap. As he slept, his body changed and when he woke up, he had turned into a beautiful blue-tailed dragonfly with broad wings and a slender body designed for flying.

So, fly he did! And, as he soared he saw the beauty of a whole new world and a far superior way of life to what he had never known existed. Then he remembered his beetle friends and how they were thinking by now he was dead. He wanted to go back to tell them, and explain to them that he was now more alive than he had ever been before. His life had been fulfilled rather than ended. But, his new body would not go down into the water. He could not get back to tell his friends the good news. Then he understood that their time would come, when they, too, would know what he now knew. So, he raised his wings and flew off into his joyous new life!

Not sure who the author is