Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

A Special Throwback Memory To Last Many Lifetimes


45 - De Sings

This is De (pronounced Der) Chang.  If a picture is worth a thousand words, I could paint an art gallery about a man who took part in creating hundreds of “forever families,” families who have adopted, in his case, from his country of China.  I will not go into the whole process of international adoption.  I could write an entire book on that.  Rather, I would like to tell you about the permanent effect, that a stranger on me and so many others, from the other side of the globe.

I knew very little about De when we first arrived in China.  I knew that at one point, he had been a singer for Chinese opera, and that his wife was a daughter of an Army general.  I knew he had a daughter.  From the business of adoption, I knew that I was going to have to give 100% blind trust to a complete stranger, that not just one, but two adoption processes would be completed without complications or incidents.  What I got, was so much more.

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On both trips to adopt our daughters, De was our “facilitator”, or guide.  He had a translator as his English was okay, but needed help.  From the day we landed on mainland China, until we left the country with a new addition to our family, he would make sure that all of our paperwork, which needed to be completed in Chinese, which none of us parents spoke, he would also make sure that we were treated exceptionally, and kept safe.

Sure, De received pay for helping with this process, but it was not the money that drove De, it was his love for the children that were going to find homes, and parents who might just have questions about Chinese children.

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With my two trips to China, De handled two travel groups of families totaling 21 families.  That meant that he was responsible for handling stacks of paperwork that had to be completed, notarized, and filed, as well as making sure that all fees accompanying the process in China were taken care of.  But it was quite clear, if there were to be no problems, we had to trust De.  He had done this process hundreds, if not well over a thousand times.

But there was no feeling in the world, like when he informed us, both times actually, that we were going to meet our daughters earlier than expected.  Everything was going smoothly.  And were led into a room in civic affairs, where down the hallway, we could hear multiple cries of babies, we assumed to be headed towards our holding room.  For the sake of communication, we were simply given a number for our family, and as the child was brought into the room, the number of the family was announced.  And here is what it looked like, when De called out “Jiangxi #7”.

16 - Gotcha

I was unaware of this photo being taken, as I was holding a video camera and still camera of my own, totally unaware that this moment was being captured by someone else for me.  That is my oldest daughter right in the middle of the picture, wearing green.

From that moment on, it was a whirlwind of more paperwork, but now with the babies in our arms, De always made it a point, to be a part of the children’s final days in China also.

38 - Playtime With De

De enjoyed playing with all of the children, and it was clear that many of the children had heard music, because every now and then, De would sing, and the children were immediately drawn to him.  But De gave us so much more than that.  With one of our trips, he taught us culture, showed us tradition and history, and on one trip, showed us humbleness.

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He took us to several temples and other public areas, but it was when he took us to a neighboring village, that we understood, the lives that were going to be changed forever, and given a future that might never have happened otherwise.  It was a farming village, most of the homes consisting of four brick walls, and concrete floors.  There was no working plumbing or electricity.  And while we told to “bring gifts” (toys and candy), we were not prepared for the frenzy of children that greeted us after we departed the bus.  It was so overwhelming because the children knew this was one opportunity that they could finally “have” something.  Sadly, there were many who “took” from smaller and weaker children.

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There are so many families that have personal stories of De and his wife Helen.  For me, during our first trip, in spite of telling my bank that I was going to be travelling to China, and needed my credit card to work, so my card would not have been treated as stolen, was cancelled by my bank anyway, for that very concern.  For three days, De fronted me cash, vouched for my hotel stay, and took care of my intercountry airfare, telling me “no worries” (it was pronounced in Chinese – may wan tee).  It made me crazy hearing it repeatedly as I tried to deal with a 13 hour time zone difference.  But as he professed, it would, and did work out.  Here was a total stranger taking care of yet another total stranger.  This trip could have been a real disaster had it not been for the way that he took care of us.

He had a talent for “knowing” what the children needed.  On our first trip, his room was directly below ours, and hearing Madison’s loud screams came upstairs to find out what was the problem.  She would not take her bottle, would not nap, and would definitely not stop crying.  He actually took the bottle with formula in it, stuck it in his mouth, gave a few sucks, and then said, “need more sugar.”  We did as he instructed, and lo and behold, she stopped crying.  How could he have known this, except for his experience and care.

And during our second trip, he remembered us.  As I believe he remembered every family that returned to adopt or visit.  But our youngest daughter was so sick from an ear infection, he arranged medical care for us, with prompt treatment that finally provided relief for Emmalie.

But as I said, in just our family experience alone, he joined 21 families together forever.

47 - Entire Travel Group DSC02718

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This photo was the last night that I saw De and Helen.  Our travel group decided to throw a dinner for them, to show our appreciation for what they had done for all of us.

While I have always hoped that I would return to China with my daughters being older of course so that they could appreciate such a trip, a visit to De was certainly expected.

Unfortunately, last night, I was informed that he had passed away.  I am not sure what happened, if he was even sick.  The “why” does not matter.  What matters most, is the adoption community lost one of its greatest advocates, and we lost one of the most influencial people of our lives.

I have so many memories of this great man.  I have so many stories to tell my daughters of their trip to the United States Of America.  So many tears, so many laughs.

I am not sure what De’s beliefs were, but I do know, if he believed in Heaven, he is taking care of children up there.  I will miss you my friend.

Celebrating Josh


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I am sad right now.  My sorrow deepened by yet another long term survivor, recently passing away from a return of the same cancer that led Josh into my life, and other health complications.  But it is because of how he lived his life as a survivor, my sadness is oddly not as intense as is normally the case.

The story goes back just before the turn of the millennium, around late 1997 I think.  I was trying to extend my outreach of cancer support to patients beyond my local efforts.  Long before Facebook, there was a “listserve” for those who had battled Hodgkin’s Disease (us long-termers still refer to the politically incorrect terminology).   A mother on this listserve, was looking for support.  Her son, in his mid-20’s was battling Hodgkin’s.  She signed her posts, “Lynn, mom to Josh”.

The impression that I got from Lynn, that Josh could be very stubborn.  He also gave me the impression that he was very private, so I rarely heard many details from Lynn.  Conversations via email typically  revolved around pending testing, and of course, anniversaries of remission, and spontaneous symptoms.  But I only heard from his mother.

That changed in 2000.  With only one question from Lynn, “why on Earth would you want to visit Bakersfield, California?”, I made plans to do just that.  I was planning a weekend trip to the west coast to see a professional football game and thought I would just drop south into Bakersfield and meet my very first long-distance, long term cancer survivor.

Josh

There was no doubt what Josh meant to his mother.  Lynn and I spent countless hours exchanging emails about Josh’s conditions and concerns.  And when I finally arrived in Bakersfield, clearly we knew that we only had a limited amount of time during my visit, and Lynn was going to make it count.

But the visit was not going to be all about cancer.  Not if Josh had any say in it.  Besides the rock band Korn originating from Bakersfield, another popular tourist stop, was Buck Owens Crystal Palace.  Yes, for those of us old enough, the same Buck Owens of the “Hee Haw” country variety television show.

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The museum/restaurant was filled with all kinds of merchandise that belonged to Buck Owens.  And for a music history nut like me, I was in a place that ranked among Graceland, the Music Experience, or even the Rock N Roll Hall Of Fame.  We all dined at the palace.  There was not talk about cancer.  We enjoyed a great meal, had a few beers.  And Josh showed me, what I have never been able to do in my life, he lived his life the way that he wanted to do it, following his battle with Hodgkin’s.

When we got back to his house, we had some other minor chit chat, about some of his collections that he kept.  But there was never any discussion about cancer.  This is the way that I knew of, that he wanted it to be.  I would hear about his brothers, but no cancer.  That was how I knew Josh, and from the one and only time that I got to meet and spend time with him.  And yes, Lynn, as hard as it was to believe, I enjoyed my visit to Bakersfield.

His mother Lynn, or as I nicknamed her a long time ago, “mother Lynn”, as I often found myself relying on her as a voice of reason for any number of issues that I may have been dealing with, remain good friends.  Lynn is not the first parent I know, that has faced losing a child.  There is an expression that goes something like “no parent should ever have to bury a child.”

Lynn, my friend, I have no concept of the loss you feel right now.  I can only imagine and try to understand.  But if there is one thing I do know, that you never once, stopped fighting for Josh, even when Josh did not want to fight.  I knew from every conversation that we had, how much you loved not just Josh, but all of your children (and grandchildren).

And following that visit, our circle of survivors would extend even further, all across the country, and the Earth, and perhaps, our meeting may have been the beginning of “Paul’s Heart”.  Our connection showed how important, and needed, contact with other survivors, family, and caregivers was to get through each and every day.

Josh, you are missed my friend.  I am thankful that I got to meet you.  And I am thankful for the friend in your mom, that I got to know because of you.

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Words Of Understanding


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Personally speaking, I have been through a lot over the last 27 years.  While there are many issues of my life that I have chosen to make public, for the benefit of others, there are many, many other issues which I keep private.  I am like this for several reasons:  pride, protection of others, to inspire, to not instill panic or paranoia.  Simply put, since my diagnosis, I have had good days, and I have had bad days.

But being involved in the world of cancer as much as I am, I have learned so much.  I have learned about progress for newer cancer patients, which will some day mean a cure for all cancers.  But I have also learned of so many who struggle with survival.  Surviving cancer, or any serious illness of event in a life, is not just as simple as “just getting over it.”  I am a fairly positive minded person, but I cringe every time I hear someone either tell me, or suggest to someone to “just get over it.”

“Just get over it.”  Four of the most hurtful, selfish words someone can say to a person who is experiencing a level of pain, on that person can possibly know.  While I may have an understanding, given from my own experiences, I have know idea the level of the pain or the struggle being dealt with by an individual, even if the person explains it to me.

One of our list members on one of my Facebook pages is having one of those moments.  And it is quite serious.  I can recognize the pain, the frustration, the futility.  I can understand when a person asks, “how much more?”  The response to the original post was as is expected.  Nothing but 100% support by so many who have experienced similar sentiments.  Every member offered encouragement that most in the “outside” could not comprehend.

Then one of our members responded with a poem, which I believe echoes what many of us long term cancer survivors feel:

“This is living life after Hodgkin’s.
We will be sad.
And unhappy.
And have terrible pain.
And misery.…
And thats ok. And “normal”.
And deserves respect and deserves to be heard.
The fun will happen too.
But we won’t deceive ourselves.
Or so I think, at the moment.”

  • Dolly

The majority of cancer patients often make a statement that they will not let cancer define them.  But there is a difference between “defining” and “breaking”.

Thank you Dolly for sharing these words of  understanding.

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