Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “January 10, 2013”

My Story, Your Comments, The Future – What It All Means

I have to laugh when I think back to my college English days.  It was my second year, and I had received my first negative comment/grade on something that I had written.  All through high school and the first year of college English, I truly enjoyed  the various projects and topics that I got the opportunity to write.  But then second year English came along and changed that with my very first paper of the semester.  I got ripped apart by my professor.  And it was enough to make me put my pen away.  Every now and then I would pull it out to send something off to a local newspaper if I felt like stirring something up, but that was all.

But then an opportunity came up.  Though I have been involved with the program a couple of years, I am still learning the who’s, what’s and where’s of it.  The hospital that I travel to has a program of creative writing which joins up the writer, usually a cancer patient or survivor, with a writing coach.  And it is that simple, nothing more complicated.  There are opportunities to go further, such as writing articles for its cancer support newsletters and an awesome book called an Anthology which is published annually.  Each chapter published is also written by a patient or survivor of cancer.  And if even luckier, some of those chapters are selected for a live performance by professional performers at special survivor’s event.  I will have my second submission printed in that anthology this year.

I realized then how energized writing was making me again.  And to have a coach assist me in many of my writings gave me a completely different direction.  I made the decision that I wanted to write my own book.  I am still tossing around idea about the topic or topics, fiction or non-fiction.  But I had to do something with everything my brain was pushing out.  A very dear friend to me made the suggestion to put my stories on a blog.  There was some hesitation just because it was an entirely new concept to me, to be extremely public (beyond a local newspaper).

So I took her advice, created several topics which I have a personal interest or advocate for, and then I let my fingers do the walking.  I will do my best to mix up the topics so that no one loses interest, but also, I do not want to overwhelm anyone with many of the serious subjects that I write about, so I will try to mix in some lighter writings.  But it would end there would it not be for all the comments, compliments, recommendations, and constructive criticisms that you all have given me.  I am thankful for the efforts that you support me with by sharing my blog stories and recommending me to your friends.

I have several projects currently under way and I have literally dozens of new posts begun.  “Paul’s Heart” is more though than just some ramblings that escape the pocket between my ears.  It has also provided me with some very much needed self-therapy.  It has personally been amazing to look back on some of the things that I have been through, several which I had long forgot about.  But I am also developing a strong appreciation for the things that I have gone through and where I am today.

Ultimately, I hope that no matter what my story, it provides you with the needed laugh, the welcomed comfort, inspiration and hope when all seems unreachable, and so much more.  I have been so touched by many of the comments I have received as I honestly did not expect the deep sincerity and history of some of the comments.  I thank you for helping me and encouraging me to write about “Paul’s Heart.”

Paul Edelman

A Child’s Innocence Lost

I noticed something the other day about my daughters.

When I was a young boy, my grandmother used to take me to visit my Aunt Helen and Uncle Frank.  They lived on a farm in Quakertown.  They lived in a huge old farmhouse  which was easy to get lost in trying to navigate through it.  Outside there was a large barn, swarming with cats.  And of course, lots of farming equipment.  Perhaps it was one of those pieces of equipment was responsible for the hook that my uncle had to wear on his right arm.  All I know is that I was petrified of visiting him and he had no problem reinforcing that fear by pointing and waving his hook at me.

That kind of fear is a normal reaction.  As a child, it is normal to be curious, yet also afraid at conditions that are different from what we are used to.  It could be an amputation, deformity, a tic.  The reaction of a child is most likely going to be a stare at minimum.  I do not recall anyone else in my family that had to deal with any physical or emotional handicap.

I cannot say the same for Madison and Emmalie.  At the ages of five and three, the girls would witness the most difficult image in their short lives.  My heart surgery was the first time that I had been away from my daughters,  It was three days before it was felt that I was strong enough to be able to handle the emotions of a visit from them, and the majority of the machinery that I was attached to had been removed.  The only things that remained were an IV line in my arm, catheter, some drainage tubing from my abdomen, and a port that had been placed into the side of my neck which actually had several lines going through it (I do not recall exactly where they all went, but one went directly to the heart to measure “true” blood pressure, and I believe another was some sort of defibrulator).

I missed them so badly.  The last time that I had seen them, I was under the impression that I was just going in for a routine catheterization and stinting for a blockage.  I told the girls “I will see you tomorrow.”  Tomorrow never came.  So when Wendy brought them in that Sunday, I could not wait for a hug from each of them.  Instead, Madison slowly creeped up the bed, seemingly tracing her movements along the tubing so as not to damage them or hurt me.  Emmalie’s reaction definitely caught me off guard, fear.  It would be another two days, when the tubing would be removed, before she would even come near the bed.  As much as I expected this, it was still sad for me, that the little girl I held for two years was frightened not necessarily by me, but rather the situation that I was dealing with.

Over the years, they would witness “daddy in the hospital again” which of course meant more wires, more tubes, and more time away from home.  But now when I go into a hospital they understand that I am going in there so that I can get better.  And I will be home.  At least fortunately, that is the way that it has been so far.

A couple of years back, I had a very close aunt take a nasty fall, and as commonly happens, the fall leads to complications which in turn, resulted in her passing.  Prior to this event, I had received a phone call that it was not looking good for her, and that I may want to stop by the hospital.  My family was on its way home from a day trip, so everyone was with me.  My mother greeted me and I asked her if she could watch my daughters while I go in and give my last respects to my aunt.  When I came back out, my mother asked, “Don’t you want to take the girls back to see her one last time?”  I felt that was a morbid thing to ask.  Wendy and I have had discussions that we will not keep things from the girls, but when they do learn of certain topics, it will be when we believe they are ready.  Which in this case, I did not think the girls were ready.

Another thing to take into consideration was the fact that the hospital played a major role in our decision.  I have spent a lot of time at this particular hospital, including for my heart surgery.  My children recognize this hospital as “daddy’s hospital”.  It would not take much effort on my oldest’s part to put two and two together, associating my aunt passing away in this hospital (after having just visited), and then being worried about me not coming home ever the next time that I would land in the hospital.  And that is exactly what would happen.

Sadly, my aunt did pass away later that weekend as we had been prepared for.  And my daughters were told that she had passed away, but there was no mention of the hospital.  Since this time, there have been more hospital visits for me, and my daughters are able to just pass it off as, just another thing.  I had never really thought about the impact all this had on them until the other day.

My brother-in-law was battling Lou Gehrig’s Disease.  The time had come, that a decision needed to be made to insert a feeding tube in order to get nourishment.  His ability to swallow and not choke was nearly completely gone.  A stomach feeding tube was the only way for him to keep wait on, and get the proper nutrients.  The girsl had known for quite some time that Uncle Mike was very sick.  We never talked about him dying, even when he got the feeding tube inserted.  This one day during the past summer, we were all outside his house, by his pool.  He had come out to join us poolside, and had taken his shirt off for some sun.  And there it was in plain sight, his feeding tube.  But my daughters just continued to swim around even running past Mike a couple of times, without noticing the tube.  Even when it came to meals, Mike sat with us at the table, poured his meal into the bag, connected the tube and hung the bag on an IV pole.  My daughters sat next to him, and never mentioned this, never stared at it.

I feel that all of my health issues have desensitized my daughters.  They should have at least been curious about the tube that disappeared into “Uncle Mike’s belly.”  I was horrified by my uncles hook.  Frequently you can see small children staring at amputees in wheel chairs or those with Downe Syndrome.  On one hand I know Mike was comforted by the fact that neither of them treated him any differently toward the end like the rest of us adults.  But I still could not help but think how sad it is, that all of my health issues have had an effect on that innocence.  On the plus side, they are very strong when someone needs the “it’ll be okay” hug.

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