Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Adoption”

08 Jan 2018
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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
06 Dec 2017
1 Comment

We Have Learned Nothing Since The Story Of Ryan Halligan


Every year, the school district that my children attend, invite a gentleman to give an assembly to the many schools and parents on the awareness and dangers of bullying.

John Halligan and his wife’s worst nightmares were realized when their son chose to end his life at the age of 13, in 2003, after relentless bullying, both on line, and in person.

As a child, I myself was bullied relentlessly, daily during my elementary and junior high school days.  To this day, over forty years later, I still have no idea why.  I know I was short.  Shy.  Introverted.  But I was an easy target because I was also known to not defend myself in a fight.  I had been taught to turn the other cheek and walk away.  My reward for taking the high road was usually a hit in the back of the head.  I believe the only thing in my favor, was that the internet did not exist back in the 1970’s.  Having no adults to support me, or defend me, had the internet been available, I probably would have found others in my similar situation, and they… may have had a solution for me.

In my adult life, I was involved as a youth leader with high school and middle school aged kids.  Dealing with bullying, accidental deaths, and of course suicide was not an uncommon situation.  Someone in my group would always know someone who was battling a difficult situation.  It is a shame, since the day I started college, and wrote my first piece on teenage suicide in America, things have not gotten better in over 30 years, which I definitely attribute to the internet and social media.

I got to meet Mr. Halligan several years ago, when I was campaigning for school board of my children’s school district.  One of my campaign issues was safe schools, definitely an anti-bullying platform.  Ironically, the current school board was often used as an example of bullying for tactics used during meetings.  At the same time, I volunteered as a parent rep for a pilot program, called Olweus which was a multi-level bully prevention program.  This program would consist of several layers from staff to parents, and several steps to handle bullying as close to when it starts as possible, even prevention.

For the year that it started, there was a lot of excitement for the Olweus anti-bullying program.  But there was also a lot of work, expenses, and cynicism.  Teachers already had a lot on their plates between lessons and testing as well as other support they provided for their students.  In order for the program to be successful, that meant that all the elements of the program needed to be kept up to date, and that would cost money.  And the cynics would play their part, the only purpose of the anti-bullying program was for the district to look like it was trying to do something.    Now, the program is gone in less than four years.

My daughters have another five years of school left.  And I am sure bullying will not go away on its own, just as I sure that school districts will continue to turn the other cheek, protect the rights of the bully over the rights of the victim.  Yes, both are entitled to a safe and free education, but that does not give the right to ignore the horrendous and terrifying bullying that millions of children must put up with.

Even when a parent tries to do something on their own to prove bullying is occurring, such as Sarah Sims of Norfolk, VA, who actually placed a recording device in her elementary school-aged daughter’s backpack, to capture proof of the bullying.  Unfortunately, the device was not able to do so, which it most certainly would have, because it was confiscated by the school.  And not only was it taken away, but then the mother was charged by police with a felony, (punishable up to 5 years in prison) for intercepting wire, electronic or oral communications, along with… get this… contributing to the delinquency of a minor.  THE MOTHER WAS TRYING TO PROTECT HER DAUGHTER!!!!  The charges have since been dropped.  But this is a glaring example of how school districts lack any balls to protect the victims of bullying over concerns of lawsuits by parents of the perpetrators.  School districts do not want proof of bullying, so that they can claim it is not an issue in their school.  Two other students over the last few weeks ended up with similar and tragic conclusions.*

Bullies of 13 year-old Rosalie Avila of California evidently feel that it was not enough to drive the child to suicide, but continue to harass the family of Rosalie with such an ugly post, “‘Hey mom. Next time don’t tuck me in this,’  (a bed). ‘Tuck me in THIS,’ (a grave).  Her diary pointed to endless ridicule about her appearance.  As of this posting, Rosalie remains on life support.  The bullies… remain in school.*

Ashawnty Davis was a 10 year-old 5th grader in an elementary school in Colorado.  She hung herself.  She chose to confront her bully, which resulted in a fight, which was videoed, then shared on social media.  Of course the school district made sure they were in the clear, stating that the fight did not occur during school hours.  Great, glad to know that you (the school district) did all you could to prevent this tragedy from happening.*

Bullying has gone on from decades.  Through my entire elementary and junior high school education, I was bullied.  To this day, I still do not know why.  As a candidate for school board, one of my top priorities was to take bullying in school head on.  And the attitudes of school districts continue, both bully and victim have a right to education.

How many more children will die because no one wants to take responsibility for their roles, schools and parents?  And if bullying is going to be treated as a right to the perpetrator, then what can be done for the rights of the victim?

Here is what you can do in the mean time.  If your child is bullied, report it to the police.  It is then dealt with as a civil matter, not a school matter.  And then, the bully, and their parents, will still have their rights to education, but will also be held accountable for taking away the rights of another student just trying to learn.

*these paragraphs were documented from the web site “The Raw Story”, though they were also available on numerous other web sites as well.

Posted in Adoption, Bullying, Education, Family and Friends, Inspired By...
27 Oct 2017

Parenting Made Too Easy


I have always thought of myself as the stricter parent.  As many parents may have stated themselves, “I have plenty of time to be your friend, right now, I have to teach you life, responsibility, decisions and consequences, etc.  I have not been robotic about it, and my daughters over their lifetimes have experienced way more fun times and memories than when they have seen me strict.

But there are times, when, even unintentional, my “strictness” would appear without even an effort on my part.  Years ago, I believe my oldest daughter was around 3 years of age.  I had seen her sitting on the lower steps of our stairwell inside the house.  When I asked her why she was sitting there, silently, hands folded and bored, she responded, “I’m in timeout.”

Had I had a liquid in my mouth, it would have come spewing out at that moment.  Though I asked her why she was in timeout, I cannot recall what her reason was, because it was when I asked how long her mother had put her in timeout, she responded, “I put myself in timeout.”

I want to state, I am not a big believer in timeouts, and even less on spankings and such.  But clearly, the few times that timeouts had been implemented, had made an impact.  And then I told her to take herself out of timeout, that only parents get to put their children in timeout.  And I gave her a hug for being just so cute.

Over the years, I took a lot of great care and attention, to make sure that my daughters knew actions, consequences, and impact as they grew older.  Lessons in life for the most part, have turned to their education.  After all, if you are reading this, chances are you were impacted not by what you learned, but how.  On average, grades for my daughters are generally good.  I know they are good students.  They are not perfect, and when they come home with a grade, lower than they are accustomed to, they know what will follow.

“Did you not understand what you were being asked?”

“Did you try your best?”

“Did you study enough?”  And so on.

Usually, these are short conversations.  And has occasionally happened, some of the lower grades ended up being dealt with through the teachers due to ambiguity.  And then there is this conversation with my teenager:

“I don’t think I did not do well on my science test.”

“How come?”

“I didn’t study enough.”  Now, I want to clarify this.  She did study, just what she thought would be on the test, not the entire chapter.  The entire chapter ended up being on the test.  “I know differently now, I need to study harder, and everything.”

My daughters keep doing it to me.  They make the mistake, and recognize and correct it on their own.  I could not be any more proud of them.

Posted in Adoption, Education, Family and Friends, Inspired By... | Leave a comment

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