Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Happy Thanksgiving From Paul’s Heart


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Happy Thanksgiving to everyone following “Paul’s Heart.”  I am thankful for so many things in my life, and this blog is something I am not only proud of for the number of people I have reached, but am so thankful for all the support that has ever been offered.

This officially begins one of the busiest, expensive, stressful, and memorable times of the year.  For some, it is one of the most difficult times of the year to endure.  Many families are struggling financially or have suffered personal loss, and for some, this may be the first year that they are going through this holiday season under those conditions.

Others may be in situations that just seem outright sad, going through holiday struggles year after year.  “Paul’s Heart” had its origin twenty-six years ago when I was diagnosed with Hodgkin’s Lymphoma.  I have not had a “typical” Winter holiday season since, ever.  There has always been some sort of crisis, tragedy, or struggle to endure.  But that is what I do, I get through it.  I have to.  I have two beautiful little girls who depend on me, and enjoy the holidays.  They do not know why I have such difficulties with the holiday season.

I am not alone.  Many of my friends here are in a similar situation as me.  They are away from family and celebrating Thanksgiving with friends.  And no matter what the meal will consist of today, we will all make the most of our holiday today, and we are thankful for that.

There are actually meaningful football games to day, unlike years past, where a team just shows up to play on Thanksgiving.  At least four teams playing have playoff implications.  I know where my eyes will be glued tonight.

 

PART_1417100861070_Image1417100860969   GO SEAHAWKS!!!!

And then, in the wee hours of the morning, another new Thanksgiving weekend experience for me.

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I will be on an early morning flight to be reunited with my daughters.  This will be our second Thanksgiving since the divorce was filed, but this is the first one that I have been away from them so long.  My mother has made this trip possible for me, and for that I am very thankful.

As we approach the Winter holidays, all I want is for my daughters to know how much I love them, how much I miss them.  And just as my past visits with them, that is all they will be told.  I am keeping everything about the divorce from our conversations.  I know this is not easy for them.  And it would be even worse for them, if they knew how one parent treated the other.  The children love both of us and this season is going to be critical to the children if that love is to survive.  And just like every other holiday season, I do plan to get through it, and hope the next year will finally be the time I get to say “Happy Thanksgiving” without following the phrase with “but…”

Happy Thanksgiving to everyone.  Girls, Daddy cannot wait to see you tomorrow.  I love you.

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Comic Relief Just When It Is Needed


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“The human race has one really effective weapon, and that is laughter.”  Mark Twain.

With that, I want to introduce you to one of the most “powerful weapons” in the human race, my youngest daughter, Emmalie.

Typically, a biologically born child will have inherited characteristics of either parent.  But with Emmalie (and my oldest daughter Madison) being adopted, any traits that either daughter share with me, are purely coincidence.  Yes, there is what they have learned from me as they have grown.  Prior to the divorce we spent a lot of time together, doing homework, playing games, and my favorite, holding them in my arms when they were younger.  But their personalities were determined long before I had even met either one.

Through the adoption process, one of the things that I had to supply, was an autobiography about myself.  This would cover everything from my hobbies, employment, family history, and such.  Once all of the personal and legal information had been gathered and organized, the paperwork was then sent to the country of China’s Adoption Affairs office where the adoption process would continue through their end.

My dossier would go into a department those of us in the adoption world know as the “matching room.”   Where by some magic, dossiers are compared with profiles of at least ten children, most of them toddlers and babies.  At this point, a child is “matched” up with their parent.  The result is pure magic.

Both of my daughters share many of the characteristics and interests that I possess.  Only one characteristic either daughter have that I do not, but their adoptive mother does have, and that it artistic hands.

But Emmalie possesses one of the most important traits that I have, a sense of humor.  This child is notorious for causing an outburst of laughter at just the right moment.  She is a goofy and quirky little girl.  The smile that follows resembles the young child dinosaur in the 1980’s television show who regularly blurts out “gotta love me.”

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I had taken the girls to see Shrek 3 (all three movies were great and entertaining).  At one point during movie #3, spoiler alert, Fiona’s father dies.  However, prior to his demise, he had been turned into a frog.  And of course the punch-line that followed… here it comes… “he croaked.”  Well of course, everyone the theater had sat in silence at the king’s passing, in spite of the symbolic comment.  Everyone except for Emmalie, who immediately burst out laughing at the joke itself.

But that is who Emmalie is.

It should come as no surprise that during one of the more difficult times in all our lives, that once again, she would provide her patented comic relief.  During one of our recent nightly conversations, her spontaneous humor knocked me off my “chair.”

Emmalie routinely asks me questions that have nothing to do with nothing, and though she claims there was no motivation behind her next question, I actually do believe her to a degree.  The divorce has been difficult for all of us, but my estranged wife and I are doing what we are able to keep the impact on the girls to as minimal as possible.  And though I believe Emmalie felt she was just throwing out one of her zinger questions as me, there is a part of me that knows in my heart, perhaps there was more to her question than she was letting on.

“Daddy.  I have a question.  Are you going to get married?”

Besides the legally obvious situation, that my divorce is yet to be final, marriage is the last thing on my mind, if ever again.  This was my second marriage to have failed, and clearly, the process has left me with no desire to ever share that commitment ever again.

But I am in a relationship again, and so is my estranged wife.  All four of us, seem happy in these new relationships.  So I could not help but wonder, if perhaps my youngest had overheard conversation from my ex and her boyfriend about getting married.  I know I have never brought up marriage.

“No… Emmalie, Daddy is not going to get married.  Why do you ask that?  Is mommy talking about me getting married or is she thinking about it”

“I was just wondering Daddy.  It seems like you are really happy.  And it would only make sense that if you were happy, then you would get married again.”

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If only it were that simple my precious little angel.  But as I thought about her question, I realized that there was more to it than just Emmalie seeing her daddy happy with someone else, or her mother happy with someone else.  Emmalie is more wise than what she realizes, and for those who receive the gift of her wisdom, we are truly blessed.

It has been so long since Emmalie or Madison have seen either of their parents smile.  And now our daughters are seeing bother their father and mother smiling again.  Emmalie has let me know that she is glad to see me smile again.  But the smiles do not have as much to do with what it happen currently, but rather what we were dealing with in recent years, and the effect it had on our girls.

I love you both so much Madison and Emmalie.

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Finding Something Good Out Of Something So Tragic, Offers Small Consolation


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I first wrote about Michael Scheidemann’s story back in September (see “Meet Michael” in the post archives or “Michael” in the pages section).  It is a tragedy that I will always believe could have been prevented.  I am usually objective and professional about my comments.  But with my experience as a long term cancer survivor, and the knowledge of side effects from treatments, and the technology available to monitor and detect issues related to those side effects, yes, I believe without a shadow of a doubt that his death, could have been prevented.

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The picture above is when I met Michael about a month after he finished his treatment for the same cancer that I had, Hodgkin’s Lymphoma.  Michael and I shared a lot of similarities.  Our birthdays were just a day apart.  I was the same age as Michael when he was diagnosed.  And then, what should have been for the better, and one would assume due to the advances of medicine in the decades since I had been treated, Michael was treated  with a standard treatment that exposed Michael to half of the chemotherapy drugs that I was given, and did not have to go through any radiation therapy.  He sailed through his treatments without one complaint, and with only one visible side effect, lost his hair.

From this picture on, things were supposed to be in one direction, survival, living his life in remission of one of the more curable forms of cancer.  That is not what happened.

Soon after this picture was taken, it was discovered that one of the drugs that both Michael and I were given, had caused irreparable damage to his heart.  At the time, all the family could do is move forward, fix what had been failing, not look back at what had been done.  Extraordinary measures were made to save his life.  But on January 6, 2014, his body could not handle any more trauma and he passed away at the young age of 24.

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For the purposes of this post, I will discuss my comments about what went wrong on another post.  Because as I promised the Scheidemann family, I believe, and have confirmed that a simple test could have been performed, and should have been performed since a drug with known possible cardiac side effects, could have determined the damage that had begun as soon as the first or second dose of the drug.  With the discovery of any damage, and clearly there was, a different treatment regimen could have, and should have been used.  And if I can do anything for this family, I will help them prove this so that Michael’s death will not be in vain.

It is an unwritten expectation in life, that it is only children, who are supposed to bury their parents, not the other way around.  I have never experienced the loss of a child, nor do I ever hope to.  And I am certain that the loss of a parent pales in comparison.  As a parent, we feel we must protect our children and do everything we can, and that in death of a child, somehow a parent feels as if more could have been done.  Regardless of how many times I have spoken with Michael’s mother and father, they will always carry this burden, in spite of me reminding them of all the things they did do for him.  But you see, there is no “prior experience” with having cancer.  Once you are thrown into the fight, you must be focused to get done what needs to be done, not think about all the other scenarios.  Everything that happens during this battle, is nothing more than cause and reaction.  We do what we have to, and hope that is good enough.  It has to.

Following Michael’s passing, his family did something extraordinary in Michael’s memory.  Michael was a student at Florida Gulf Coast University, needing just six courses to graduate with a degree in political science.  He had actually registered for classes that he had delayed to undergo his chemo treatment, and was ready to begin again, before everything went horribly wrong.  The family put two plans of action into play in Michael’s memory, one for Michael, and the other “from Michael.”

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Earlier this year, FGCU had notified the Scheidemann family that Michael would be given his degree posthumously.  His older sister Alyssa, also and FGCU alumni, accepted his degree, in his memory.

In the meantime, the family was hard at work, establishing a memorial scholarship fund, in Michael’s memory.  The scholarship was set up to assist students who faced similar challenges as Michael.  Through determination of the family, and the dedication of those who knew of Michael and his family, the Michael E. Scheidemann Inspirational Scholarship Endowed Fund was established, which will now award money to a deserving student at FGCU, to assist with college expenses.

A very special luncheon was held yesterday, to gather recipients of the school’s scholarships, and the sponsors who made the scholarships possible.  Yesterday, the Scheidemanns got to meet the young student, who is the benefactor of the first Michael E. Scheidemann Inspirational Scholarship Endowed Fund.

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Make no mistake, while the rest of us are truly touched by this gift presented, it by no means takes away the pain that this family feels every day, without their son and brother, Michael.  But they are extremely happy, that they have been able to help a young man, afford his education.  Michael would have wanted it this way.

If you would like to make a contribution to this scholarship, especially with those interested in making donations before the end of the year, please consider the Michael E. Scheidemann Inspirational Scholarship Endowed Fund.  Here is the information:

send to the attention of:
Christopher Simoneau

VP Advancement & Executive Director
Florida Gulf Coast University Foundation

10501 FGCU Boulevard South
Fort Myers, FL    33965

Write Michael E. Scheidemann Inspirational Scholarship Endowed Fund in the Memo Section of your check.

 

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