Paul's Heart

Life As A Dad, And A Survivor

14 May 2017

Happy Mother’s Day


I sure am glad I did not forget today.  But it was apparent this morning, while at the grocery store to get some breakfast items, there were many who definitely did not remember today.  And to say it was a gender issue, with the majority of customers being men (probably 95%), is an understatement.  Yep, so many just remembered this morning in fact, today is Mother’s Day.  Fortunately, Publix was prepared to bail out the absent-minded gentlemen.  Their reputations for being the most thoughtful would be saved.

I live quite a distance from my mother, so I was reliant on the United States Postal Service to get my gift to my mother in time.  That required me to remember at least a week in advance.

I have written about the relationship between my mother and I over the years.  While not the typical “Norman Rockwell” portrait of a family, our relationship is what we have made it today.  And that is what counts.

Yes, we rely on Moms to take care of our bumps and bruises, help us with homework, and cook some of the greatest Macaroni and Cheese, but it is in adulthood that we really get the chance to see the true value of “mom.”  And then “mom” realizes her role changes as well.

My mother has gone through a lot with me as her son.  And though really I cannot take all the blame for it, because of the many health issues I have, it kind of does make it my fault.  Unlike as a child though, the care of my “bumps and bruises” as an adult are now handled by me.  For the most part, I make her sit on the sidelines, watching, trying to coach from the bench, cheering me on.  And I know she wants to do more.

I feel she has more important things to do now as my mother, at least more important to me.  At some point in a mother’s life, there is a good chance she is going to take on a new role, grandmother.  Now, while today is Mother’s Day, my mother’s role as a grandmother is important to me.

During my early childhood days, my mother had to work second shift jobs.  Which meant after I came home from school, my grandmother took care me during the week.  The majority of my childhood years spent with my grandmother, was probably the most critical period of my life as there was so much that I learned from her, not just the every day stuff, but lessons in life.  But I also grew very close to my grandmother.

Not only would my grandmother become my moral compass in life, she was the most important inspiration to me when I was diagnosed with Hodgkin’s Lymphoma.  She was the first cancer survivor I had ever known.  And I knew that if she could do it, I would follow in her footstep, even using the same oncologist.  Of course we know how this story has played out.  I am currently a 27 year survivor.

When she passed away, it really hit me, what I had lost.  I realized just how important a role she played in my life.

But as an adult, I witnessed other grandparents in action.  So many were just so proud to show off their grandkids and all the memories that they were making.  And the pictures all showed the same thing, huge smiles from the grandchild looking up at either “poppop” or playing with grandma.

As a parent, I witnessed this new bond and its importance first hand.  My children loved my father, and love my mother.  Right from the beginning, I made it a point to make sure that both of my parents, even though divorced, would each play an important role in my daughters’ lives.  When it came time for visits, both of my daughters were eager to make the hour long drive to visit both of my parents in each of their homes.  They greeted my parents with excited hugs and kisses, and lots of giggles.  And when it came time to leave, my daughters left with the biggest hugs and “can’t wait to see you again” kisses goodbye.  My daughters valued my parents as much as I valued my mother’s mother.

In recent times, the role of grandmother and mother have combined in a huge way, and what I once thought was impossible.  Two years ago, my mother gave me the surprise of a lifetime.  Not only was she going to get on a plane and fly to visit me, she was bringing two very important co-passengers… her granddaughters, my daughters.

It was the first time my mother had flown.  It also gave my mother some very special time with her granddaughters and vise versa.  This trip has been repeated, and will continue.  This is a special thing between my daughters and my mother, their grandmother, something all will always remember, especially me.

The best gift I could give my mother is the appreciation I have, for all the love and kindness she gives and shares with my daughters every chance she gets.  To know how much she means to my daughters, and my daughters to her, is what means the most to me at this point in my life.

I know today is supposed to be a happy one, lots of flowers, making breakfast for mom, taking mom to dinner.  And of course, flowers and cake.

But my heart goes out to so many too, who grieve on this day.  Because of my circumstances and age, I know so many today who grieve for their mothers.  And a totally different sorrow, mothers who grieve the loss of their child.  If there is any solace, it is seeing the memories that they have been sharing today, that clearly show how much each other meant in their lives, and there are happy memories to remember them by.  And it is my hope, that they can still find the ability to celebrate that love today.  Because at one time, this day meant something special in the physical sense, it should mean just as much in the spiritual sense and memories.

Happy Mother’s Day.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Recreation | Leave a comment
06 May 2017
2 Comments

An End Of An Era


In a little more than a month, my youngest daughter will be done with elementary school.  I spend so much time, going back through time in my mind to the days that both of my daughters were first placed in my arms to today.  My oldest has just about completed her first year of middle school, which is worthy of a post itself.

I look back at my own childhood, and the memories I have from elementary school, and the many teachers that had the first major impact on me, getting me to enjoy school.  And for me, it is that simple.  But now, as an adult, elementary school worth took on a whole new meaning.

I could not have been any more excited for the first days of school for my daughters.  First, I would ask off from work so that I could not only see the girls off to school, but took as many photos as I could of those first days, leaving the house, getting on the bus, to even entering the school.

From those “first” moments, my life as a father would change forever.

Monday begins Teacher Appreciation Week around the country.  And I do not think you will find anyone who appreciates teachers as much as I do, and my daughters are only mid-way through their education.

I remember all my teachers through elementary school, mostly by name, not necessarily for what they did for me, except for one, Mrs. McGuire.  I was quite sick and needed surgery during my first grade year.  She visited me and helped me with my homework while I recovered, yes, beyond the 9-3 school day.

My oldest would start elementary school officially in 2009.  The school district was going to be entrenched in a brutal contract negotiation, that would eventually result in a strike by the teachers.  Like many uninformed parents, I was irate that the beginning of the year was going to be delayed, which of course was going to have a last minute impact on finding child care to substitute for the absence of school.  “Those damn greedy teachers!  How dare they?”

But as quickly as those emotions came out, the school board released a full page color ad of the salaries of the teachers and union personnel of the district, of course to enflame the community.  My past experience as a victim of bullying, I saw this for what it was, bullying.  And immediately, that flipped a switch in my mind that something else was going on.  It was not as simple as it seemed.

In the meantime, the teachers returned back to school, and on the very first day, on a Thursday, at 7:45pm, and there is a reason I remember this exactly,  I received a call from my oldest daughter’s teacher.  She wanted to discuss a concern that she had about my daughter’s cognitive levels, especially with her being internationally adopted.  We spent more than 45 minutes on the phone.  Now keep in mind, this teacher had two young children of her own, but contrary to the popular myth, teachers days do go beyond the hours of 9am to 3pm.  Instead of spending time with her own children, she was helping me, to address a concern with mine.  There are countless examples of this throughout both of my daughters educations.

Teachers have almost as important role in the lives of our children as we, the parents.  Teachers spend more time during the awake hours with our children, not just teaching our children, English, Math, History and such, but often times, lessons about life that we do not have the simple answers to, many times uncomfortable.

I will never forget the care given to not just my daughters, but to all the students who would hear of the horrible massacre of children at Sandy Hook Elementary School.  Even small children know that they should be safe in school.  Sandy Hook changed that not only for the children who heard about the horror, but teachers soon found out, that in spite of the slaughter at Columbine High School years before, violence could even reach the elementary levels.  Now, teachers not only put their heath at risk with contagious germs and such, but were now expected to physically guard our children.  I am certain, this was definitely not dealt with in college when they studied to be a teacher.

My personal experiences with the teachers at my daughters elementary school also had a major impact.  The uncertainty of my health, led to many instances of an emergency phone call to the school, with last minute instructions for care, transportation, and sometimes, explanations.  And every time it happened, and there were a lot, the teachers responded with such assurance and professionalism, which made each incident a lot less traumatic, not having to deal with the stress of the care of the girls.  I always knew they were in good hands.

And no parent wants to get the phone call, “your daughter’s school bus was involved in an accident.”  But I got one of those phone calls, and again, the school staff handled everything perfectly.

During that first year of my oldest’s school year, I paid a lot of attention to the negotiations of the teachers contract negotiations.  I began to attend district meetings, noticing more things that did not make sense, and clearly came to the conclusion that the teachers were being made scapegoats for a situation that the school board had created.  It was very easy to fool the taxpayers who were just as uninformed as I had once been.  My voice by itself, along with a barrage of letters to the local newspaper opinion columns was not enough.

And so began my short political career, as I decided I would campaign for school board in the next election.  Along with four other candidates, and a great campaign committee, I spent the next six years, dissecting the business and activities of the school district.  Clearly things could be improved, but I definitely felt it was not the fault of the teachers as it was being made to believe.

Along with my school board campaign, I also became more involved in my daughters school activities, participating in their parent organization, an anti bullying campaign, and even managed to have some extra curricular fun, volunteering as the “official” school disc jockey for fun events made even more popular with fun music.  My daughters were split on just how cool it was to have “dad” DJing, but their friends always encouraged them that their “dad was cool!”

Over three years ago, the direction of our family took a dramatic turn that none of us had ever expected, divorce.  And with that, came separation from my daughters.  But the staff of the school, as they had done the previous years, stepped up as they always had, realizing that even the distance between my daughters and I, I was going to continue to be involved in my daughters educations, as much if not more, as when I had been local.  Teachers, guidance counselors, nurses, the principal, everyone has done everything I could ever ask, when it came to helping me, help my daughters with their educations.  From studying for a test, to making sure homework got done, the staff has always been there.

It is Teacher Appreciation Week.  And you better believe it, I appreciate the teachers that my daughters had, teachers that other children have, friends of mine who are teachers, and the ones who started it all for me, my teachers.  Teachers are full time workers who put their health and their safety at risk every day.  Their day begins when they step through the entrance of the school, but does not end, well beyond exiting those same doors.  Teachers have homework or tests to correct, preparations for the next day lessons, and of course, there are the personal correspondences to reach parents whose children are struggling in school.  I know there is more that they do, but I can only talk about what I have experienced.  I am not a teacher.  But they know what all they do in a day for children.  And so for that, I publicly say thank you.  And keep up the good work.

And to the staff at my daughters elementary school, I am so thankful to each and every one of you.  My daughters have so many positive memories.  You kept them safe, and as I found out with my oldest daughter in her first year of middle school, you did a great job preparing my oldest as she has done well so far after three marking periods.

Posted in Uncategorized
05 May 2017
2 Comments

In Defense Of Jimmy


Four years after this photo was taken, I was diagnosed with Hodgkin’s Lymphoma back in November of 1988.  Decades later, Hodgkin’s is still considered a rare cancer, and in spite of many figures of celebrity status, gets very little attention, especially compared to the big cancers such as breast, lung, and colon cancers.  Of course, social media was also not much of a communication tool to reach others with the intent to advocate for Hodgkin’s awareness.

I was a nobody.  And as I mentioned, there were many actors and athletes who had dealt with Hodgkin’s Lympoma, yet not even many doctors are aware how to look for and diagnose this rare cancer.  Needless to say, none of those other Hodgkin’s survivors used their celebrity status to either draw attention to themselves or to advocate.  There were plenty of other famous people stepping up and out for the other big cancers, but not for Hodgkin’s.

Then perhaps the most famous person to be diagnosed and survive Hodgkin’s Lymphoma, Pittsburgh Penguins player and owner, Mario Lemieux, announced that he had Hodgkin’s Lymphoma.  I do not recall his staging, or treatments.  But to be honest, I was only hoping selfishly, that he would use his notoriety to bring attention to the same cancer I and many others had dealt with.  We would finally have a “spokesperson” or “face” to get us the help and care we needed.  Yes, selfish I know, but dealing with something that can kill you, can make you selfish when you need help.

Lemieux took leave for treatments, and came back to play.  Of course there was “by the way” conversation of his health issue, but to my knowledge, nothing near the attention I had hoped would be given.  Even today, as I write this, I have no idea of Lemieux”s health or if he participates in any kind of advocacy for lymphoma.

This was our (lymphoma survivors) opportunity.  I was a nobody.  And attention to Hodgkin’s would go back into obscurity.

So, on Monday, after a lengthy absence, late night TV host Jimmy Kimmel returned to the air, with clearly a heavy heart for what should have been a celebratory event.

Kimmel’s wife had given birth to their second child, a son.  He had been born with a critical heart condition.  You can see the seventeen minute monologue anywhere on the internet.  But Kimmel, clearly shaken, had chosen to take the opportunity to bring awareness to several issues, as well as publicly thank those, that saved his son’s life.

I have had my own health issues to deal with my children and hospitals.  And of course, and this is why I am mentioning this, because I understand all too well about heart issues, as I had open heart surgery to treat a late effect caused by treatments for a pre existing condition, my lymphoma.

So, I understand heart surgery very well.  I know the efforts that are taken to save the life of someone about to die.  What I do not know, is what it is like to go from just seeing your son being  born, to rushing to save his life.

I was 42 years older than this poor child.  But I recall the image myself, as well as the confusion of what had just happened to me, and dealing with the pain.

From the moment that Kimmel started his monologue, I was in tears, as is often the case, when I hear stories of others who have gone through similar situations that I can clearly relate to.

Kimmel spent most of the monologue explaining what happened, and even let the audience know that there was a happy ending.  But that did not stop us from seeing how very upsetting and concerning this was, even for a funny man.  He also took the opportunity to thank as many as he could, for saving his sons life, and to encourage awareness to situations like this.

His monologue lasted about 17 minutes.  And clearly he was speaking from his heart.  There is not doubt.  And the thing about speaking from your heart, you speak with your emotions.  And emotions can often be more powerful than the words themselves.  Often times, I find myself not publishing any “raw” or unedited posts, because I do not want to take away from what I am trying to do.  But I am also very well known for speaking or writing unfiltered, blazing with emotion.  And when you do that, you can make some people upset.  And usually, the ones that you upset, are those that just want something to disagree with.

After singing the praises of those that treated his son, Kimmel began talking about the importance of the health care that his son had, and would need.  Today, this is a huge deal as health care dominates our headlines.  Kimmel spoke against our president’s efforts to reduce the NIH budget which clearly has an impact on research and medicine.  He also spoke about the issue of pre existing conditions which now his son had.

As someone who deals with more than a dozen pre existing conditions myself, as a blogger, I can only reach so many to make aware of the needs we have, and the protections we need to have.  But still, I consider myself a nobody.  So count me as one of those, who applaud Jimmy Kimmel, for taking that difficult moment, not only to put his personal life on display in heartbreaking fashion, for using his celebrity to bring awareness of what we need as far as health care.

And for those with a certain political lean who complained that Kimmel used his status to bring evidence to the needs of the American people, too bad.  The House Republicans should be ashamed of themselves for what they are trying to accomplish.  I have written before about the consequences of repealing the Affordable Care Act for me and others.  I know what is at stake because my life depends on it.  Fortunately, I do not believe this bill will be approved, because it is inhumane, and definitely does not lead to America being great.

Mr. Kimmel, I give you a lot of credit for what you did.  I know what it took for you to do that.  And I am thankful that you were able to bring awareness to the issue and needs of health care in the United States.  Ignore Joe Walsh, Michele Malkin, and others.  They are nobody and should be ashamed of themselves for ridiculing you in one of your family’s darkest hours, saved by heroic efforts by great medical personnel.

I wish your son a complete recovery.  Thank you for showing the happy ending.

 

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

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