Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “March, 2013”

Madison’s Top Ten


 

The first half of my oldest daughter’s childhood will be gone.  She has turned ten which I expect to bring in all kinds of changes to deal with the second half of her childhood term, the teenage years.  My mind often switches to memories of Madison, as many of her homework assignments often have to do with places she has visited, things that she has done.  There are things that stand out in my mind and take no time to recall.  They are Madison’s Top Ten memories.

1.  “Family #7!!”

This is what our guide in China yelled out as the caregivers who had escorted our soon-to-be children, began said goodbye to the babies they had taken care of until this great day.  There were ten of us families, and we were number “seven”.  All of us were strangers when we left Newark, New Jersey and in an instant, we all became family, sharing a special moment that will last forever.  We becamse what many in the adoption community call a “Forever Family.”

Madison had been dressed in three layers of clothing, sweating profusely inside.  She was approaching a year of age so she had some teeth, her four front teeth which allowed her to place her fingers around the teeth and create the perfect seal while sucking her thumb and finger.  She did not cry often, and when she did, it was for food.  Cheerios made her very happy.

2.  Wildwood, New Jersey

While every child loves the beach as well as the ocean, Madison associates the beach with something else, amusement piers.  We have several dozen pictures of Madison riding different carousels all over the country which by her third birthday, meant different rides.  And by her sixth birthday, kiddie rides just were not cutting it.

Unfortunately, I do not recall the name of it, but Madison had gone on her first “adult” level roller coaster at age seven.  The coaster was one of those momentum driven rides filled with hills and fast, winding curves.  It was not a large coast like you would see at a Six Flags park or Disney, but it was not a miniature coaster either.  Her smile had smoke coming from it and she rode the ride three more times before we headed home.

3.  “Do Not Cross This Point”

One of my roles as a parent, is to teach my children to follow rules.  After all, rules exist for a reason right?  But what happens when your daughter just looks up at you with the “Daddy you will make me the happiest daughter in the whole wide world”-eyes, and is asking you to be a non-conformist, which I do not have a problem with anyway.

And so, while visiting Seattle, Washington a few years ago, we went sight seeing to Snoqualmie Falls (not sure of the spelling).  It took quite a hike to get to, but the view from the platform was breathtaking.  Madison imagined out loud what it would have looked like up close.  Of course, I tried to explain to her that the warning sign “Do Not Cross This Point” was there for a reason, as in “the dam could be released at any time, the water could rise at any time, the rocks were difficult to climb, etc.” but Madison would have nothing of it.  Once she saw the throngs of people disobeying the warning, including with children, there was no convincing her that we could not go.

We dropped down from the platform and began our hike across the rock bed, and just a coupld of hundred feet, there were were at the bottom of the falls.  It was fantastic.  It was also a sign of things to come that Madison was going to be an adventuresome little girl.

4.  Madison’s Husband

I know.  Madison is only ten, but she has evidently been married for at least three years.  I am not sure if the boy knew it or not, but he did by the end of his birthday party.  His party was being held at his karate class studio by his instructor.  The Sensei (teacher) was quite good at handling the throngs of six and seven year olds, much better than I could.  Now the boy is quite a character, a bit on the goofy side, but what he did next would play right into Madison’s reaction.

Sensei was trying to teach a particular move.  It involved striking the boy (not physically), but the boy decided to take a dive anyway for emphasis.  To which Madison jumped up from her spot on the mat screaming “don’t you hurt my husband!”  All at once, the entire studio got silent as Madison attacked Sensei’s leg with a ferocity.  I do not know who was in more shock, me discovering that I had a son-in-law already or the second-degree blackbelt who clearly was not ready for this particular attack.  Three years later, they are still “married”.

5.  Madison The Headbanger (Part 1)

It is a longer story that I will cover in another blog, but Madison has always loved music.  She loves to sing it, play it, dance to it.  The first song that she ever heard back on United States soil that I can recall is ACDC’s “Back In Black.”  I have a wide variety of taste in music, and in general, just keep my Ipod on “shuffle”.  So you never know what you are going to hear.  But the ACDC song had just come on, and at that particular moment, I had looked back through the rear view mirror, and there I saw it.  Madison “head banging” to the beat of the song.  It was a beautiful moment.  There would be plenty of other memorable music moments, such as the first song she ever sang – “Since You’ve Been Gone” from Kelly Clarkson at the age of fifteen months.  We couldn’t understand the words that she was singing, but she got the chorus spot on!

Her knack for picking up music by ear has been remarkable.  So remarkable that she can usually pick up the music notes by the middle of the song.  And if there is a catchy lyric…  She got a lot of attention at the age of four when she began to sing “Girlfriend” by Avril Lavigne which of course drops a couple of bad word bombs at daycare.  Fortunately, she was singing the edited version of the song.

6.  Madison The Headbanger (Part 2) and These Are Real Tears (Part 1)

As parents, Wendy and I have done a pretty good job differentiating our girls’ cries, between the “this really hurts” and “I want attention”.  Madison is quite a tough little girl when it comes to crying.

But as she began to realize that there was an entire world waiting for her once she became vertical, it was not soon after that she also learned that she needed to learn about depth perception and height.  Her first and most difficult lesson came as she got stuck under our kitchen table.  I say “stuck” because instead of crawling out from under it, she was determined to walk out.   And with that, came the first thud.  We now realized how much Madison had grown in the year or so that she has been with us.  But there was no cry, so we left her to discovering her world.  Not worried, here came the second thud.

Okay, clearly she was determined, and Wendy and I just looked at each other.  “You don’t think…” and just like that, came the third thud.  Still no cry, she finally appeared out from under the table, but on her two legs, ducking under the edge of the table.  There were tears, but not from pain as she was not holding her head.  They were tears of frustration as she wanted to accomplish this goal on her own, and was having a hard time.  If there is one thing that I will say about Madison to this day, she is a determined little girl.

7.  These Are Real Tears (Part 2)

We are sitting at the dinner table one evening a couple of years ago, when Madison decides that she would like me to consider buying a reptile for her, in particular, an iguana.  Now I already maintained in our house, all at one time a dog, three cats, two guinea pigs, and two frogs which as far as I was concerned was more than my maximum that I had desired in my house, let alone, my lack of appreciation for reptiles.

So it was only natural, as I am known to do, I responded “no”.  Sensing it was the “iguana thing”, Madison turned on her bargaining powers and decided to rattle off all kinds of other reptiles as if that was the issue.  My answer was still “no”.  Realizing that I was firm on this, Madison decided to show her manipulation hand way too early in her life by proceeding further with this argument.  First came the frustration.  Next came the anger.  Then came the sadness and it was not just sadness, but it was accompanied with tears.

I looked over at Wendy who under normal circumstances would have caved long ago, worried that she would do so now.  I was trying to telepathically send her signals “be strong, do not cave”, and just then it happened.  Madison burst out laughing with the tears pouring out of her.  I let her know just how good her skills were at trying to mold her parents which is when she warned me, “you think that’s all I can do?’

8.  Attention To Detail

We had just gotten done vaccuuming the carpet when Madison had found some little particle in the carpet that had not been picked up.  It was the backing of one of Wendy’s earrings.  This is just one example of Madison’s sharp eyesight.  But when it comes to things that interest her, she has amazing recall to details, such as certain areas that we have visited, specific exhibits, even vacation memories.  Now if only we could get her to remember where her sneakers are.

9.  Snow White Has Nothing On Madison

Madison will save every living creature if she has it within her ability.  It is one thing for your child to bring home a stray animal, or yell “watch out” as you swerve and total your car to avoid a squirrel lollygagging across the street, but Madison has such love and respect for all living creatures that even those lacking intelligence can count on her, repeatedly.  Such as the bugs that keep falling into our pool.  She scoops them back out, puts them down on the ground, and then back in they go.

10.  Daddy’s Little Girl

The moment when I realized that Madison was one of the most caring little girls, was when I had to have my heart surgery.  It had been three days since Madison had last seen me, the first time ever that we had been apart from each other.  Wendy walked her into the hospital room, where I was still connected to all kinds of tubes and wires and a huge white patch covering my chest.  She gently climbed up on my bed, said she missed me, that she loved me.  She only asked a few questions about what had happened, and then asked if she could watch my television.

Madison, you are so special to me.  I love you always.

Daddy

Survivor Guilt


The following is a link to a newsletter article that has been published in Memorial Sloan Kettering Cancer Center’s quarterly newsletter for cancer survivors.  This was my second submission.  I am copying the story here, but for it too look really cool (and of course, see the other topics that are discussed) make sure you check out the link.

http://www.mskcc.org/sites/www.mskcc.org/files/node/4333/documents/bridges-spring-2013.pdf

Question:  I recently lost a fellow cancer survivor and am experiencing survivor’s guilt. Do you have any suggestions for coping with these feelings?

Answer:  First, please let me express my sincerest sympathy for the loss of your friend.  Survivor’s guilt is a common and often underestimated feeling experienced by both patients and caregivers. As a survivor or caregiver, we are expected to just be grateful and simply move on. Do not ask questions. But we do.  A year after my own treatment ended, I trained and participated in a peer-to-peer program with the American
Cancer Society called “Cansurmount.”  The concept is to match survivors of cancer with patients who are struggling with their own diagnosis, treatment, or survival.

My first patient was a 14-year-old girl who would eventually pass away from the same cancer that I had, leaving me to ask, “Why her and not me?”
As someone who was fortunate to have beaten the odds, it was not long before I found myself facing an unexpected and insurmountable wall
of self-doubt, which I refer to as my survivor’s guilt. Perhaps survivor’s guilt is a way for our hearts and minds to remind us of where we came from, and what we have endured. The important thing to realize is that this feeling is often overwhelming, but can be alleviated.

With technology, I have been able to widen my experience and knowledge of cancer patients and survival. I have participated in Internet support
groups for over 15 years and finally accept that with 22 years of survival behind me, I am a long-term survivor.  Surviving also means that I have
experienced loss. In just over a decade, I have said goodbye to well over 100 friends and relatives who were not able to achieve that remission.

The question I still ask myself is always the same, “Why them and not me?”  But what gets me through each and every day is knowing that my survival mattered to those who have passed.  My experiences inspired them just as theirs inspired me. There is no way to know the reasons that some survive and, sadly, others pass. The answer can be as simple as the one that comes from a parent when a child asks, “Why?” and the parent responds, “Just because.” It is cruel and it hurts.

It matters that you are here now and asking this question because at some point someone else will read your question when they are questioning
their survival and know others have gone through a similar experience.  Reach out for help. Support from others with personal experience or
professional knowledge (like the staff of the MSKCC Counseling Center) is essential to help us understand that what we feel inside is common and
expected, and can be overcome.

Waking Up Late


Normally in my house, there is no such thing as sleeping in.  With a seven and nine-year old who have the internal clocks of farmer Brown’s roosters, on a rare day off from work, I am lucky to get passed six in the morning.  My daughters know there is a lot that we can do in a day, and they do not want to waste a minute of that time.  But as many parents know, let it be a school day and you have to drag children out of the beds, still clinging to their bedspreads as you load them onto the school bus.  Except today.

It happens once every so many years, I woke up late this morning.  But instead of just soaking in the “why” and enjoying it, I jumped into hyper mode, blowing right passed my daughters who were in awe of the mid-March snowfall, clearly anticipating a snow day off from school, maybe which would translate into a day off for Daddy from work.

Unfortunately, that is not how the day went.  Much like the expression, “woke up on the wrong side of the bed,” starting off my day, which is fairly routine (I could do it in my sleep), there are things that I do naturally and planned.  I skipped past morning meds, school backpack prep, pet feeding, and lunch preparation as I raced to get to work before being late.  I ended up late anyway, but feel from the harried state, set in motion a chain of events today that just like my morning began, sped and spiraled out of control.

Oh sure, things happen.  My waking up late in the morning has no more an effect on events of a day, any more than I can control the sun rise in the morning.  But my reactions to everything I am certain would have been different.  Additional work duties to an already tardy start of the work day, only kept me behind on my work load.  The quick pace emotionally left me concerned that I was not concentrating enough to make sure the rest of my evening would go as planned, nor would it.  I was contacted about a work issue, and then additional news came about someone close to me dealing with cancer waiting on the start of treatment that I was not prepared for.  Nothing like a little late evening politics to round out the night, and I am ready to start off tomorrow morning, on time, and a little slower of a pace.

Oh Hell, who am I kidding?

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