Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Adoption”

03 Feb 2018

Dad Edition 1.4


It was inevitable.  I have seen this happen so many times before.  I have even made several jokes to others affected by this moment… a daughter’s first date.

The days are passed, where my daughters looked at me more as some sort of superhero.  Of course, the super hero reference is more than coincidence as they both know how much I like superheroes.  Each of them have their own special skills, abilities, traits, and characteristics.  But as my youngest daughter let me know the other day, not to undervalue the role of a Dad as a superhero.  I may not be green, but unprompted, she said, “Dad, you are one of the strongest people I will ever know.”  She was of course making reference to the many physical challenges of my life, and my refusal to quit.

But now, as I enter the next phase of parenthood (full blown teenagers), just as superhero movies get re-boots, I am due as well.  Although I will still retain all the qualities that my daughters have known their whole lives, strong, smart, brave, there is a new one that I want them to pay special attention to.

My oldest is going to be going to her first dance soon.  I remember my heart dropping to the floor when she told me.  Of course, she relished in telling me this news, because I have always kept this type of future conversation very light, jokingly, maybe, that I wanted her to remain a little girl, never grow up.  But she is growing up.

When I talk to my daughters about this next part of their life, I talk to both.  Because it is important.  I have told them, it is important first and foremost, that they respect themselves first.  How they want to be treated, is how they will expect an interested individual to treat them.  My daughters should want doors opened for them.  If the dating continues… gasp… gets serious… gasp… that they refer to themselves as dating or… gasp… boyfriend or girlfriend, then the actions of the other must reflect the values that I want my daughters to insist on.  I told them that if hands are going to be held, then school books should be carried for them.  Of course, most importantly, treat my daughters with care and respect.

All kidding aside, I am very proud of both of my daughters.  I believe they both have a good head on their shoulders.  And I knew some day this day would come.  I am hoping that they have seen enough of my example to see how my actions, and that they should want to be taken care of the same way.  But here is an interesting, and differing view point of just a two year difference.

In having the conversation with my oldest daughter upon finding out of her first date, the first question that I asked, “is he nice boy?”  And she said yes.  I did ask her his name, and I did so, as I explained to her, this time was one time that I did not want to make a joking matter, and treat him with respect right from the beginning, which meant, calling him by his name, not “him” or any other nickname.

It was the next question that I got two surprisingly different answers.  I asked, “who is paying for the dance?”  She responded that they were each paying their own way.  I could not have been any more proud of her.  Having experience of being a teenage boy, going “dutch” (each paying their own way), was at least a psychological way to make sure that each knew that there would be nothing funny going on during the date, that otherwise might be assumed if paid 100% by the suitor.  Of course, I complimented my daughter on that decision, saying only that it was a good thing, because by doing it this way, it would allow them to enjoy only the moment they were in, going to the dance, without thinking about anything else.  Sure,  I am dreading dates #2 and #3 and so on, but at least I know right now, she is thinking respectfully of herself.

My youngest daughter took it from a different angle.  She is two years younger, but felt her sister was making a foolish mistake not saving the money by making the boy pay for the dance.  Of course, I would agree with her logic, because I have had frequent conversations with both about money and decision making.  And I want them both to make good money decisions.  I let her know that she made a good point, but then I told her this situation was a little more complicated than that.  I kept the explanation a bit simple by just saying, by her sister paying her own way, it did not make the boy feel or think, that there was any more interest at that time, and she would not expect that either.  This way, there was no pressure, they could just enjoy the school dance.

I am fortunate to have the relationship with my daughters that I do.  It is not the Norman Rockwell family photo type, as like many families, our family is no longer together.  But between the times that we were together, through the last 24 hours, I still take every opportunity to remind them about life, what they should want, expect, how to handle adversity, and hopefully to make good decisions.  One of the best decisions I made, was in hiring their “final” babysitter.  After having issues with several, we found “the one”, a teacher at their daycare, and for the next eight years, she became a role model for them as both a young adult and student.  This special babysitter was not only caring when it came to babysitting, but in her personal life, she balanced work, school, along with what was important to her at the time.

For now, I am starting to regret teasing my other dad friends about this day.

Posted in Adoption, Education, Family and Friends, Inspired By..., Recreation | Leave a comment
25 Jan 2018
1 Comment

Defining Insanity – Why Do We Still Do It?


I cannot name the author of the following expression, well, because it is just too confusing.  Rumors attribute to Einstein, Ben Franklin, and others, depending on who you wish to give the credit.  But as argument to who the author is does not change the quote.

“The definition of insanity, is doing the same thing, over and over again, and expecting a different result.”

For decades, this is exactly what we, as a society have been doing the same thing over and over, and expecting different results.  School shooting – express shock, pray for victims, forget.  Teen suicide – express shock, deny signs that might have prevented, pray, forget.  A trusted staff member violates children sexually – express shock, deny, forget.  All three of these issues have been in the spotlight recently.  I have written many posts about all of these issues.  Sadly, my posts prove the point about defining insanity.

12 year old Gabriella Green hung herself January 10th of this year.  One fellow teen decided to trash Gabriella on social media with horrific rumors and innuendo.  Devastated, she expressed to another fellow pre-teen, she had tried to kill herself, to which her “friend” told her over a phone call, “just do it.”

Bailey Holt was just 15 years old, before she was killed (along with another 15 year old student) and more than a dozen injured after being shot, in school by a fellow classmate.

I am posting the picture of the judge in the case, as opposed to the 150 victims of a sexual predator, a once trusted staff doctor of several sports programs including Olympic athletes.  During sentencing, which the perpetrator received over 175 years and is not eligible for parole for at least 90 years, the judge expressed, “I just signed your death warrant.”

All three situations, it is the same thing, over and over, and yet we expect different results.  This is insane.  Innocent children are dying, or at the very least, having their lives destroyed, because we cannot come up with anything better than the usual, express shock/pray/move on.

We have to start someone.  Parents need to be in control of their childrens’ social media if they are going to allow their children to be on it.  I am a firm believer in allowing my daughters, who happen to be similar in ages to victims in all three of these situations, to have certain freedoms, but given the atmosphere, and the reluctance of entities we trust with our children to protect our children, I still, as a parent have to be that first line of defense.  I do not believe my daughters to be on social media (actually neither has any interest in it currently), but when they do decide to engage, I want their user name and password.  At least until they are 18 years of age, that is not only my right, but my responsibility.  Gabriella and so many others may have had help to deal with their angst instead of feeling isolated and hopeless.

As for the school shooting, I am tired of the argument from both sides, “need common sense gun control” or denial from our representatives of government or the NRA.  The fact is, neither give a shit that we now have school shootings nearly once every week.  We are supposed to believe that our children will be safe in school.

I graduated in 1983.  Shortly after that, police officers were soon being used in the schools, as well as metal detectors.  As an alumni of one of the first schools outside of a major city to use these options, it was embarrassing.  But seriously, a government that will not do anything, and most school districts more interested in protecting the rights of the bully over the victim, what other options are there?

And how many people knew about this monster, trusted to treat student athletes only to sexually violate them, and did nothing.  Yes, it is a double edge sword.  Yes, the whole “innocent until proven guilty.”  Yes, the whole “turn your back for the good of the program” or “if you want your success, you will stay silent.”  These horrific acts were committed against these children, and those who needed to protect them, turned their backs.  And just who else might have known this was going on and did nothing?

As far as I am concerned, if you know something is a possibility, and you do nothing to voice that concern, you are complicit, allowing the action to commence further.  Just because it has not happened to your child, does not make it okay that you did not speak up.  Again, having two daughters the same age as the victims in all three of these scenarios, this hits real close to home.  I have many friends who have lost children, permanently, witnessed their never ending grief.  And I am sure they would say the same thing, to do nothing is to take their lives, if at the very least, their innocence away.

If you suspect something, address it calmly, rationally, and legally.  At the very least, you put the possible perpetrator on notice.  But to do nothing, someone vile who is actually continuing their abusive acts, will only keep at it.  And that is what would make you complicit.

All three of these situations could have ended differently, but instead, our society keeps doing the same thing, over and over again.  Youth suicides.  School shootings.  Sexual abuse by those in positions we trust – coaches, doctors, clergy, teachers, etc.

It starts with a communication and involvement.  Be involved with your child’s life.  Make sure that your child can come to you and confide in you.  Make sure that your child knows that you will protect them.  And then back that with actions.

Posted in Adoption, Bullying, Education, Family and Friends, Inspired By..., Politics
08 Jan 2018
6 Comments

What I Want My Legacy To Be


A friend of mine, actually two of them stated recently, “though my life has not turned out the way that I thought, I would not change what I have now.”  Truer words have never been spoken.  A cancer diagnosis in my early 20’s completely derailed the direction that I thought I had planned out ahead of me.  But looking where I am now, I find myself having returned back to the simplicity of my future plans, again, keeping in mind what is important to me, not expected of by others.  Materialistic goals once again of no importance, rather, what friends and family will remember me for.

This was an example taught to me by the countless stories I had heard about my grandfather who had passed away before I got to know him, as well as the influence on my life by my grandmother.  My grandfather was a small-town philanthropic.  My grandmother was all about “do for others before yourself.”  My grandfather was also the inspiration for my enjoyment of music, but that is another post.  I remember how proud I was, to hear the elders of my small town, refer to me as “Claude’s grandson,” followed by conversations about the many good things he had done in our town.

On the front page of “Paul’s Heart” is a countdown clock which is currently set for the 30th anniversary of the day that I completed treatment for Hodgkin’s Lymphoma.  It is a personal decision that someone sets the mark where their life is at the half way mark, but for me, I have lived more than half of my life with cancer, and its late effects from treatments.  I am also past the half-way point of the century mark.  And while I really have not given it a lot of thought, because of all the health issues that I have, and how close on multiple occasions my story could have come to an end, I know that I have a lot more fight in me.  I want to live.  And there are two factors that drive me.

My daughters mean the world to me.  And very much like my friends’ quote at the beginning of this post, while they were babies when their lives directions had changed, there have been changes since also for them to deal with.  But the one constant that I have made sure of, my daughters know how much I love them, and how I will do everything I possibly can for them within my ability.  For them, they know it is not the materialistic things that matter, but time, and words that matter.  Every day, I tell them that I love them.  I help them with their schooling which has always been important to me.  And more importantly, I guide them as they head toward their future.  No matter their choices, they know they will not be judged negatively by me, only supported and encouraged.  Both of my daughters have a determination that is unrivaled.  And as they go through life, I will be with them every step of the way.  Graduations.  Walking them down the aisle should they choose to get married.  And also, I have hopes of one day, being a grandfather myself.  But it has been my daughters that have gotten me through the most challenging and life-threatening times of my life.  They are what drive me.  And as they have told me, I am “very tough for everything I have gone through.”  I am “a fighter.”  Their words, not mine.

After my daughters, I want to be remembered for my support for cancer patients and survivors.  It will never be on the major scale of an American Cancer Society, but rather one person at a time, and it has always been, as many as I can reach.

Before my treatments were even completed, almost 28 years ago now, I had completed training to become a counselor for cancer patients.  It was a unique program called “Cansurmount”, peer based counseling.  Counselors would be matched up with other cancer patients who were dealing with similar cancers.  As I soon found out, the rarity of Hodgkin’s Lymphoma, and shortage of counselors, I would be counseling patients with other cancers as well.  I would visit patients in their homes and many times in treatment centers, or even the hospitals.  One thing was obvious, every patient was encouraged to have a cancer survivor standing in front of them to prove to them, that they could do it.  As someone who battled cancer with no examples of survivorship, I can tell you, this was a big deal.

In the mid 1990’s, the internet gave me another way to reach out to other Hodgkin’s patients.  List serves (email support groups) had been created to connect many who were in search of answers, and inspirations.  And for the first year or two, my concentration remained directed towards cancer patients.  I was able to provide encouragement to many others in ways I never dreamed possible.

Then, one of my fellow survivors on a particular list serve, recognizing my longer tenure of survivorship, had encouraged me to participate in a newer group, specifically created for long term survivors of Hodgkin’s and other cancers.  It was not long that I was involved, that I actually felt out of place.  These lists did not seem at all about living life without cancer after treatment.  The people in these groups were dealing with serious issues, of which I had none at the time that I was aware of.  I tried to hang on as long as I could.  Emotionally, the toll was huge, and honestly, scared the shit out of me.

Through these groups however, I started to learn of other survivors who had lived just as long, or longer, post-Hodgkin’s.  Finally, I was seeing the inspiration I needed to realize that I could live past the magic 5-year mark that cancer patients always hope to reach.  But seeing them through a computer screen was not enough.  I decided I wanted to actually meet them, face to face, just as I visited cancer patients.  I could not possibly visit all of the new friends that I had “met.”  So I decided to invite them all to my home.  Approximately 20 of them came, from all over the country, and the world (visitors from England and South Africa).  It was set up as a “conference” for the weekend, which included fellowship, and education as I had invited some professional speakers from the medical profession to talk about the advances of cancer treatments and learning to live life.  It was so successful, and the feelings were mutual among those that attended, and expressed by those not in attendance, another gathering needed to be held again.

This time, the event was held out in California, and we had doubled the amount of people that had come to my home.  For me, I continued to meet so many other survivors of Hodgkin’s Lymphoma and I know that I could not have been alone in how I felt.  We were not alone.  By this time, I had met over 50 other survivors of Hodgkin’s Lymphoma.  And the importance had sunk in on just how important it was to meet other patients and survivors.  Next thing you knew, others would try to set up these types of gatherings, at the least, even if only a few at a time.

In 2008, my health took a dramatic turn.  Up until that time, I was just counting the days that I survived Hodgkin’s Lymphoma.  I had not been followed up in years once I hit my five-year mark.  I will hit my 10 year anniversary in April of major heart surgery to correct damage caused over time, from the treatments that saved my life.   I had heard of these issues online, but not from the survivors I had already known.

While my interests in helping cancer patients remained strong, I now realized that I had to concentrate on survivorship issues as well.  As I would find out, very little was known about our issues, because that magic 5-year mark?  There was little if anything known about survivors passed that point.  We were not supposed to live long enough to develop the side effects that so many, and now myself, were dealing with.

Like the cancer patients I met and was counseling, it became important to meet other survivors who were dealing with these severe health issues as well.  Most doctors did not know anything about us, how to diagnose us, how to treat us.  It was up to each of us to spread the word amongst ourselves.  All of a sudden, as patients, we had knowledge to take with us to our doctor appointments with our mysterious ailments.  If we were lucky, as I was, we dealt with an open minded doctor who listened to us, and felt there was something to be taken serious.  For too many others, they faced cynical attitudes of denial, sent home, with feelings of hopelessness.

In the years since, I have literally met hundreds of other survivors.  Though in recent years, my ability to travel has been limited, until this time, I travelled all over the country meeting others.  And no matter where I went, it was announced to internet support groups that I was going to be in the area, and “how about anyone like to get together while I am there?”  New York.  Seattle.  Texas.  California.  Pennsylvania.  Florida.  Anywhere, USA.

Cathy.  Danny.  Donna.  Tammy.  Lynn.  Davina.  Karen.  Lisa.  Jennifer.  Tobi.  Stephanie.  Betty Ann.  Peter.  Kristi.  Michael.  Leslie.  Angela.  The list goes on.  I have met hundreds of other survivors, and have conversations online with hundreds more over various web sites.  It was inevitable that another world would be crossed, as a couple of my fellow survivors have also adopted children, from China, just as I did.  It would be nice to meet them all.  I will not say it is impossible because if I believed that way in life, I would not even be writing this post.

 

Sadly, I have lost so many fellow survivors as well.   2017 was a very painful year for friends and fellow survivors that passed away.   This has been the hardest part of my survival, as it causes a flare-up of my Survivor’s Guilt.  It is a concept that only those who deal with this guilt, can understand.  Yes, I know, I should be grateful for my survivorship, yada yada yada.  But that does not help me deal with the “why them, not me?”  Some received more harsh treatments than me, many received way less.  I have attended the funerals of so many out of respect for my friends and their family, but also so that I would never forget what they meant to me.  It provided closure.  Again, I have attended funerals all over the country until recent years, because it was what I needed to do.

Newer patients are followed much more closely because of long term survivors like myself and the others that I mentioned previously.  Today, survivorship clinics are popping up everywhere in the United States, and the world.  And I honestly believe this could not have happened were it not for us survivors having reached out to others, to offer hope and direction, where to get answers.  We are a special group of people who put their political and religious differences aside, who are there for each other, day after day, with encouragement, support, and acceptance.  And we are all still trying to make arrangements with each other when we visit somewhere.  It is good not to feel alone.  It feels great to be understood.

This is what I want my daughters to know about me.  I may not be an inventor or cure a disease.  But I did what I could to help others deal with a most difficult time in their lives.  I wanted to make a difference.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart

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