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Aug. 22nd, 2007

Moving Forward...

Thank you to everyone one of you who reminds us that Ben lives on in all of our hearts and minds. I admit that there are moments when I succumb to tears and still struggle with the spiritual relationship I must now define and develop with Ben. It is not always easy to carry on. I know that I have to but I also know that I do not have to do it alone. So, I remain forever grateful to all of you for helping lighten our load and walking with us.
We were so blessed to have many of you rearrange your schedules last minute and join us for a celebration of remembrance on Monday evening. Many you so generously responded to the last minute email request of toy donations. We were able to bring over 5 large black Santa sacks (aka hefty garbage bags) to Lucille Packard Children’s Hospital today. We filled the toy chests on the Oncology Ward, Day Hospital and Clinic. Our social worker even has a small stash to replenish. 
Everyone was so grateful for the donations. The toy chests were very bare. They only had a couple of toys in the bottom of the chests. The nurses were so happy to see us. The toy stock is very thin to non-existent they said from about May to November every year.  They said the children will be overjoyed to see all the new toys. Lately they are just looking at the bottom of empty chest or getting pencils and stickers. So we are passing on many smiles from today and throughout the coming visits by staff and children. 
Thank you for helping to make it a little easier for these children to cope with their treatments and infusions. Thank you for reminding them that while they may have cancer they are just kids too.   I am sure you can Ben’s smile from heaven to the list as well. He would be proud to know that we are treating these children as kids first.
I also want to say thank you to everyone who joined our celebration virtually. We are continually moved by the comments people leave in the blog. This has become a standing memorial for us. We read each one and are moved by your comments. So, thank you to you all as well.
On another happy note, my Dad informed me today that several of his friends in Orange County have decided to donate toys to their local children’s oncology group hospital, children’s Hospital of Orange County. What a great idea to remember Ben in your community. THANK YOU!
Well, Jacob starts first grade tomorrow. This will be a banner year for us. There will surely be many triggers along the way to remind us of Ben. We tell ourselves that this will be different. However, we remain ever vigilant looking over our shoulders at the ghosts of first grade past. We are already looking forward to a healthy graduation next spring. Hopefully, our fears will be lightened slightly as we pass through this family milestone. 
As always we appreciate all of your support and send you all of ours. We hope that you are happy, healthy and surrounded by love every day. 

Aug. 16th, 2007

Ben in WuShu outfit

Two Years Ago...Already

August 20, 2007 marks the second anniversary of Ben moving on to the spirit world.
 
We know some of you still check our blog and remain with us on this journey as we endeavor to move forward in our lives. We continue to rely on your strength and guidance through the journey.
 
As we said last year, we remain in grieving and yet we move forward. We still have many flashbacks. The moments of Ben’s life and our own remain very precious to us. We still experience extreme sadness but know that we are often blessed to have great joy in our lives.
 
This year has been a clear year of realization that we have so many things to be grateful for and to celebrate. Yet we will also have this sadness in our hearts as we wish Ben was here on Earth enjoying it all beside us. I do not believe this feeling will ever go away. However, I do believe that we can choose to decide how we channel this energy and deal with it.
 
We have chosen to move forward in building our family. We know that the love we have for Ben can never be replaced. However, we also firmly believe that love is infinite. We know it can grow even in the face of the worse tragedy.
 
We are blessed to have adopted Michael Matthew Diffenderfer in March. Jacob was present at the court adoption decree. Jacob was very proud to be the big brother that day.
 
We look forward to completing an adoption on Katherine Christine Diffenderfer sometime in the coming year. Jacob and Michael continue to adore her. As Jacob told us when we were asked if we would consider taking Katie into our home, “we should do it. Mikey is happy now but if we get his sister he will be super happy”. We are all super happy that Katie is in our lives.
 
We continue to be grateful to our family and friends for your incredible support. You have hugged us and cried with us as we recall memories or face our fears. You have celebrated with us as we get up each day and remember to move forward.  Most importantly, you continue to remind us that the circle of life continues, Ben will always be cherished and each day is a reason to rejoice.
 
On Monday August 20, 2007 we Remember Ben by Rejoicing in Your Friendship. Ben was so happy and energized when his friends were beside him. We will be having a Jump House (Ben’s favorite train jumper will be there). We will have the BBQ going and some of Ben’s favorite foods to share.  We invite you to stop by between 400 pm and 700 pm to  jump,  create a chalk sidewalk drawing and have some food as we celebrate Ben, life, family and friends and like you.
 
For those of you who wish to light a virtual candle or chalk message please post on comment on the blog for all to share.
 
Thank you for always being there. Warmest Regards.
Love,
Christine, John, Jacob, Michael, Katie and Ben
 

Apr. 11th, 2007

Ben in WuShu outfit

Ben's Birthday Anniversary - April 18, 2007

On the ninth anniversary of Ben’s birth (April18, 2007) it seems appropriate to post a family update to the blog. If you are still checking in on us through the blog, please say hello in the comments. We are always so thankful for all the support of our friends and family.
 
It has been more than a year and a half since our son, Benjamin, passed away on August 20, 2005. Not a day goes by that we do not remember something about Benny. The memories are either joyful, or somber--but always welcome even with the pain that comes with the memories. We still have about a million (give or take) Pokémon cards in a box in the garage.
 
As we move forward with our lives we have gone through many restless nights of miserable second-guessing of ourselves, and our role in his treatment--a hopeless process to be sure. One thing that remains clear is the dedication, commitment and caring of the children’s oncology community providing hope and time when none existed. We remain forever grateful to Dr. Mitch Cairo’s team at Columbia and the Lucille Packard staff that carried us through our darkest moments, the last two months of Ben’s life. This time while very trying also allowed us some final special moments with Ben and support through our grief at losing him in this world. THANK YOU!
 
So, how are we really doing? We still cry every day and when we talk with new people about Ben. Answering questions like how many children do you have is at times dicey. Since there is usually always a follow up, that leads to reliving the joyful as well as tragic moments. 
 
However, there is light in our lives more and more. We believe Ben is still present spiritually and helping to guide us every day.
 
So, overall, we have been surviving Ben's death and the mourning process intact. Our relationship is stronger now (that we have admitted that we do not actually control our lives) than it was before. Our relationship with Jacob has also grown and developed. We have new insights into the world through his eyes.
 
Jacob just turned 6 in March. He is thriving in his Chinese-English immersion school. Yesterday morning he was making up a song about drinking hot chocolate: cute, but more amazing in that it was all in Chinese.
 
We are easily freaked out by any ache or pain that Jacob gets...a headache, or tummy ache...it’s all cancer, right? We have had several sleepless nights over what turns out to be nothing.
 
We have adopted a little boy, Michael Matthew Diffenderfer, aka Mikey. Mikey will be 2 years old on July 27. He was taken away from his birth mother when he was born. We took him in from a shelter home back in June '06. The day he arrived, we heard Jacob laughing in a way that we had not heard since Ben was here on Earth. It is so joyous to have the laughter of children return to our home. Jacob and Mikey love each other. Jacob is a great big brother. It reminds us of how much Ben loved Jacob and how important Jacob was in Ben’s life.
 
In December, we were notified that Mikey's birthmother was going to have another baby, and asked if we would take her too. We've had her since January 13. She was born December 19, 2006. She is almost 4 months old now. Jacob named her Katie (Katherine) Christine. We hope to have her adoption finalized in October this year.  She is an angel. Jacob and Mikey adore her as do we all.
 
We look at our family now, and see the joy in each other's hearts and the sparkle in each other's eyes, and wonder how any of this would have happened if Benny had not gotten sick.  It is enough to cause us to consider the strange nature of God and the universe. We miss Benjamin so much that it burns, but with Easter having just passed, and Benny's 9th birthday just a few days away, we have all been very reflective of the spiritual question as to why things are the way they are and what forces are at work in the world.
 
At Benny's memorial service, John claimed that Benny was the closest thing to a real life Jedi I had ever known. Remember when Obi Wan is struck down by Darth Vader? He says that if he is struck down he would become "more powerful than you can possibly know." Well, Ben is still out there, as far as we can tell, giving us little powerful hints along the way.
 
As an example, we have been able to help many others face cancer, fight and live a high quality of life by sharing all we have learned on this journey. The uncle of John’s coworker has AML. Acute myelogenous leukemia (AML) is a fast-growing cancer of the blood and bone marrow. He is at the VA in Seattle.
 
All the treatment center research that we did in Spring 2005 gave us the awareness of "the Hutch ( a first rate cancer treatment center in Seattle)". His family had never heard of it.  His uncle had given up hope. But because John’s coworker contacted the Hutch, the otherwise hopeless case is now in the hands of a Doctor at the Hutch. His uncle has decided to continue to fight the cancer and he smiled for the first time in months. While it still looks tough for him, he has a renewed sense of his life and the love his family has for him.
 
On another note, in 2005, when Katrina hit the southeast, we boxed up most of Ben's clothes and sent them to Alabama/Louisiana through a NASA-organized relief mission to families down there that had lost their homes. Our friends adopted a family that just so happened to have a 7 year old boy that had no clothes. Jacob figured that Ben would have wanted us to do that.
 
It is our everyday experiences like the two above that tell us Ben’s cancer battle was not in vain. Everything we learned continues to work positively in our lives, and the lives of our friends.
 
We sincerely hope that you, your family and friends are healthy and strong.
With all our love,
Christine, John, Jacob, Mikey, Katie (and Ben smiling down on all of us :-))
 

Aug. 19th, 2006

Ben in WuShu outfit

Wow, Ben left this world one year ago...

On August 20th it will be a year since Ben moved on to the spirit world.

 

I am not sure if anyone even reads the blog anymore since we have not updated it in a long time.  However, I feel compelled to write something on the anniversary of Ben’s passing.  So many of you supported us through the blog and carry us on our journey.

 

We remain in grieving and yet we move forward.  We are at one moment in extreme sadness and then we can experience great joy.  We now know that with sorrow comes great pain, agony and angry.  Yet somehow we have also been able to find moments of tremendous happiness in our memories, developing spiritual connection and in our everyday lives. 

 

We remain thankful to all our family and friends for your incredible support this past year.  You have walked with us (both literally and figuratively) through our fears and celebrated our joys.  You have reminded us that the circle of life continues, Ben will always be cherished and each day is a reason to rejoice.

 

Tomorrow evening we have decided to start a small tradition in our cul-de-sac.  We invite you to stop by between 730pm  and 815pm to light a candle, create a chalk sidewalk chalk drawing and have a cookie as we celebrate Ben, life, family and friends and like you.

 

For those of you who wish to light a virtual candle or chalk message please post on comment on the blog for all to share.

 

We are forever grateful to have you have on this journey. 

Love,

Christine, John, Jacob, Michael and Ben

 

Oct. 18th, 2005

Ben in WuShu outfit

Happy 7 ½ Birthday Ben

A couple of days ago we received the following email update from friends who lost their son, Michael to Burkitt’s lymphoma in April 2005.

 

I wanted to share it with you on Ben’s half birthday October 18.  Joanne, Michael’s mother, has captured this incredible journey so well.  I cried and smiled as I totally emphasized, unfortunately, with their letter and coping.  I too believe that grief is more of a cycle rather than a linear progression.  I am hopeful that the cycle time is shorter as we move forward in time and that the “acceptance” or happy memories are more clearly prominent.  

 

 

Happy 7 ½  Birthday Ben.  For those of you that know Ben and us know that we took every opportunity to celebrate life and half birthday we always a great excuse to make a birthday cake, have a party and play.  We miss you and hope that you and Michael are celebrating your earthly birthdays and having fun.


From: Joanne Weiss
Sent: Sunday, October 16, 2005 2:43 PM

 

Dear Friends and Family,

 

It seemed an appropriate day to send out an update on how we’re doing. Six months ago today was Michael’s funeral. Today is my forty-eighth birthday. And today would have been Michael’s fourteenth birthday. It’s a day overly fraught with significance, so we’re marking it by sharing some thoughts with you. For the past couple of weeks, I’ve been looking forward to writing this email – it’s been so long since our last “Michael Installment.” But now that the time is upon me, I find myself a bit at a loss for words. What, exactly, should I share with you? That we’re doing okay; that we’re getting on with our lives; that we miss Michael but keep him in our hearts. All clichés, I know; but clichés are rooted in truth, and these are no exceptions. Grief, as those among you who have lost a spouse or child or sibling or grandchild know, is hard to describe because it’s so individual, so unpredictable, so ragged around the edges. Nonetheless, what we wanted to do in this letter was talk a little bit about our grief and our lives now.

 

We each have many identities in our lives: mother, son, spouse, colleague, friend. We move seamlessly among these identities in part because they’re so well-defined externally – each one has its own audience. When I’m talking to Aaron, I’m a mother. When I’m at work with my colleagues, I’m a professional. On the phone with my mother, I’m a daughter. But “grieving parent” is a persona, too – it’s a persona with a missing audience; it’s a private persona. Yes, it spills over into all of the other identities. But making “appropriate” room for it in your life, I have found, is not easy. You can give yourself over to it; you can deny it; but short of these extremes, it’s challenging to integrate grieving into your life. Paul, Aaron and I – each in our own ways – continue the very real struggle to find ways and means to grieve.

 

A favorite approach of mine, lately, is what Joan Didion (and the psychiatric profession) call “magical thinking.” It’s not something I indulged in a lot while Michael was sick – I was nothing if not brutally honest back then. But now that Michael’s gone, I often find myself roaming in irrational territory, feeling (despite myself) that Michael might walk in the door any time or answer the phone when I call home. He would ask me for his iPod back (I’ve taken it over), but he wouldn’t be mad that I’d been using it. He would, however, be very angry with Aaron for using his computer monitor and TV without his permission; we’d have a major fight on our hands about that one. Michael would think our new caller ID feature is neat, and when I called, he’d say, “Hi Mom. I knew it was you.” He’d have a chorus role in Oklahoma, the play they’re doing at Jordan Middle School this year, because his good friends Ethan, Bowen and Julian are all in it. And he’d be playing violin every Monday (when his teacher came for his lesson) – and rarely in between. I see his favorite gray and black snow jacket in the closet – the one he lived in throughout his chemo-cold stage – and I think, “Oh good, I’ll know right where Michael’s coat is when he comes home and asks for it.” Sometimes these thoughts feel sad; more often they make me smile. And magical or not, it’s a comfort to keep Michael’s memory warm. The monumentality of the loss is just too much to handle all at once; absorbing the loss over time helps.

 

What else have we discovered about grieving? That it’s a lonely process. When we were caring for Michael during the last year of his life, our family all shared a common mission: to take care of Michael. We were in the same boat, rowing in the same direction. Grief, however, is altogether different. We’re alone now, each in our own boat, heading in our own direction and charting our own course. It’s a shock after being so close, suddenly to find ourselves alone. It has been hard to stay glued together as a family now that our experiences are no longer shared, our emotions no longer linked to each other through Michael. Don’t get me wrong – the bond is still tight. But it’s easy to understand how families drift apart in grief, just wander off in their own directions and when they finally look up, everyone around them is gone.

 

Because grieving is unique, there’s also no blueprint, nothing to hang onto. It has no beginning and no end. You don’t “get over” the death of a child or “resolve” your grief into a neat package. This seems obvious, I know. But it’s surprising how desperately I have craved a “how-to manual.” I think it’s all Kubler-Ross’s fault for making us think there really are stages of grief; that it’s a prescribed process. Even the word “stage” denotes progression and order. There’s nothing orderly or progressive about it. It’s messy. It’s jagged. It’s circular. You’re fine one week (or moment) and uncontrollably weepy the next. Seeing parents and children at the park might delight you or depress you – there’s no telling. You walk through your days hoping that if you behave as if you’re fine, your attitude will come around to match; some days it even works. But the notion that you begin in denial, then move to anger, and after a couple more stages finally arrive at acceptance – well, that’s just not how it works.

 

So how do we get through this ordeal? Each of us has our own coping mechanism – our own drug of choice, so to speak. And through this lens, you can get some perspective on how each of us is doing.

 

Aaron is sixteen and a junior at Palo Alto High School. His clear drug of choice is denial. Aaron is firmly entrenched in a world in which he’s exactly like all the other kids and nothing bad has happened to him. This mostly works, except when some reminder (often in the form of a story he’s reading for English) punctures this bubble. Then he falls apart and can’t believe that everyone around him is so insensitive, treating him “like nothing’s happened.” But missing the obvious is a special talent of all teenagers, and our son has put it to excellent use. He’ll be okay eventually – but he’s on the extended plan for getting there.

 

We’re not sure what Paul’s drug of choice is. There was cooking, computer Solitaire, Linux, writing poetry, reading, dog walking, and contemplation. But mainly, he got back to a midlife career crisis that was upon him before Michael got sick. Never content with doing anything career-related in a moderated manner, Paul is expanding the upheaval in our lives by considering a change of career. He has returned to school, but plans have not solidified. We’ll keep you posted.

 

My drug of choice (and this will surprise no one) is purposefulness. As long as I’m busy and engaged and doing work that matters, I’m fine. I threw myself back into work soon after Michael’s funeral in April, and it has been a wonderful refuge for me. My colleagues are terrific; the work is interesting and fulfilling – I can’t ask for more. At home, I’m the great communicator. As the resident female, it’s my job to force interaction – to probe, nag, wheedle, cajole, and generally ensure that the three of us talk. We’re each allowed to drift in our own little boats, as far as I’m concerned, just as long as the boats don’t drift too far apart. I am the one who draws us back together, keeps the other boats in sight.

 

And lest we’re leaving you with too glum an impression, let us assure you that we’re taking pleasure in life as well. We’ve seen every movie that’s been released in the last couple of months; we’re eating (too) well; we’re exercising (too) little; and we’re spending time with friends. And while it’s not true that every day gets a little easier, it is true that time and distance are helping. For over a year we stepped out of the normal stream of time and put our lives on hold. We’re sticking our toes in the stream, now, and slowly slipping back in.

 

I wanted to close this already-too-long email with a thank you to everyone for your cards, letters, visits, and calls. It eases our burdens to know that we are in your thoughts – so even if you didn’t hear back from us, know that your words are much appreciated. I will let Michael’s words tell you how we feel and why we value you so much. When Michael was in the hospital, he read S.E. Hinton’s classic novel, “The Outsiders,” for seventh grade English. I recently found in his backpack an essay about family that he was writing but hadn’t finished. It was like receiving a belated gift, a cherished memento. Those of you who know Michael will hear his voice ring out in these words which (together with grammar and punctuation) are all his own:

 

“Family defines in technical terms: n. 1. Set of relations such as parents or siblings. 2. A persons child. 3. Lineage. 4. Group of related plans animals or things. I can’t add much to this other than that family could be defining people that are close to you while they’re not siblings or parents and have any real blood relation. S.E. Hinton re-defines family in the sense of what I said above. While family might be parents or siblings, it isn’t always. Families can consist of people who are very close to each-other, such as kids in an orphanage or your best friends. To S.E. Hinton, family is people who love and care for each-other very much.”

 

In that spirit, you are all family to us. Now while you might think that this is a lovely thought to end on – giving each of you a final thank you for being such wonderful “family” – you’d be wrong if you thought we’d end on such a Hallmark note. Michael goes on to write:

 

“S.E. Hinton’s example of family is different from mine.... The only way her definition of family is similar to mine is that I consider my dog, my snake, and my hamsters all as family. Paragraph three supports my statement/thesis about family in the way that I consider my pets family, and while they may not be related to me by blood, or even species, I care about them almost as much as my brother.”

 

That was Michael – always reminding us of life’s complexities and absurdities. We miss him.

 

 

Oct. 4th, 2005

Ben in WuShu outfit

Jacob prays to Ben and God

Last night as we were going tobed Jacob said he wanted to say a prayer.  This is what he said.

"Dear Ben and God,

I know you are in heaven.  I want you to come back though.  I love you very much and I miss you.  It is lonely without you.  I want you to come home so we can play. 

I  love you."

Jacob is very aware that Ben is not here physically.  It is the first time in his life he is an only child.  He misses his big brother, protector, teacher and champion.  He often looks up to heaven and asks Ben what he should do when playing a game or figuring out a strategy. 

On Sunday Jacob was taking a bath.  He decided he wanted to play with the Lego star figures that Ben had given him.  Jacob said he was glad that Ben gave him the Legos but he wanted Ben instead.

We all miss him.  We are working on having a spiritual relationship but still wish that he could have been running around with us this weekend in SF at the Music Festival and the Exploratorium like before.

I think Michael Gourdin really said it best when he said, "Cancer Sucks!"  He was a 13 year old boy who died of Burkitt's Lymphoma as well in April 2005.

Sep. 29th, 2005

Ben in WuShu outfit

Prayers

On this journey we have been able to meet some incredible families.  Please keep Paige and her family in your prayers (http://poodlepaigee.blogspot.com/).  Paige has battling cancer for over 30 months and is now in hospice care at home.  Her parents have done an amazing job. 

Also please prayer for Nicholas and his family for remission and a cure.  He recently relapsed after an allegenic bone marrow transplant last April.  Ben and Nicholas got to play a little when they were in the hospital  Ben had hopes that they would one day battle Pokemon instead of cancer. (http://www2.caringbridge.org/ca/nicholascolbygilbert/index.htm)  

His parents write in his blog - As stated September 22, 2005, gratefully Nicholas’ joy and happiness flows throughout the days. Mom & dad are so lucky; Nicholas fills our days with joy and teaches us life lessons in caring about others and passion for the things that you do. And perhaps more importantly he teaches us how to get through things that you do not like, that are necessary!

THANK YOU!

Ben in WuShu outfit

More pictures added to the Memorial Service Collection

Thanks to our friend Linda Soohoo for taking so many pictures on August 31 at the Memorial Service. I have now finally updated the collection on Shutterfly with her 350+ photos.

Here is the url:
http://www.bendiff.shutterfly.com/action/
Ben in WuShu outfit

Moving Forward

John and I are both back at work once again.  So, we are checking the blog for comments still but a little behind on updates.

As for re-engaging , we have found that the "first contact" with people after Ben's death to be the most emotional time.  All the emotions on both sides seem to be marked with tears and hugs.  It seems to be necessary step in the grieving process to let us move forward.  I remain so touched by all the support we have received on this journey and are continuing to receive. Thank you for all the emails, cards, phone calls and comments in the blog. 

Yesterday, I even was able to thank my CEO, John Chambers, personally for all the support he gave us and the Cisco team.    I feel very fortunate to have a leader who really lives by the golden rule not only in his personal life but in business.  He listens to his employees and customers and makes giving back to the community a high priority.  He truly cares about people and wants to help. His heartfelt response to me was simply, "I am so sorry"  and "Is there anything else we can do?"  I realize now, that in company the size of Cisco (~35,000 employees) he gets a call a day unfortuntely from someone dealing with serious health issue in their family.  We are truly blessed that he called us at home one Saturday and talked with John, father-to-father, offering any support we might need. (Ok, enough about Ciso and how lucky I am to work for such a great leader.)

I wanted to share a story about Jacob.  Sunday night we were taking Jacob and his cousin, Stephen, to Nickel City for some arcade fun.  On the way, the boys were talking about what they wanted to be when they grew up.  Jacob decided that he wanted to be an inventor when he was a dad.  He is going to invent things like rocket motorcycles that fly so you won't get hurt on the road.  When he is a grandpa, he wants to be a sculptor.  Stephen said he is going be an ice sculptor right away and then retire when he is a grandpa.

Jacob still asks about Ben and wonders if he will see him when we go to places that we used to go with Ben.  We went to a birhday party at The Jungle- an indoor climbing place on Friday.  On the ride there he asked me if Ben would be there.  We talked about the fact that Ben died again and that physically he could not be there.  Jacob said, "But he is in our hearts, right Mommy?"  I said, "Always."

Sep. 20th, 2005

Ben in WuShu outfit

Liz's Story

Liz is a great family friend and self appointed Godmother to Ben. She has been with us on every step of this journey. This is the story she shared.

 

My name is Liz.  My husband Tom and I have known Christine for almost 20 years.  We were around when Christine was jumping out of airplanes and talking about a guy she met named John, who was “just a friend”, and pretty soon became much more than that.    

 

She was pregnant with Ben when I was with Paul.  Through the years we have shared many normal life experiences; daycare, play dates, snow trips, swim lessons, soccer games, and casual last minute dinners.

 

It’s a struggle to understand how something so devastating could happen to our friend Ben. Actually, I can’t think about that now.   I am amazed when I think of how Ben managed during this battle, I am amazed at the inner strength of this seven year old, and I am overwhelmed at what was required of him.  I learned a lot from how he faced this battle.

 

I learned how important it is for a kid to lose himself in play.  Ben’s life, over the last 8 months, included many treatments and types of medication. These activities became a regular part of his life.   Somehow, through all of this, he found ways to play before, during and after whatever he had to do. His parents did a great job playing with him themselves and making sure there were many family and friends around for Ben. There were many things to play: board games, miniature figurine set ups, video games, and more.  Ben introduced me to Gameboy Scrabble, my current favorite!  And of course, Pokemon.    Hours and hours were devoted to playing and organizing Pokemon cards.  John learned all the video games and was probably Ben’s favorite for Pokemon battles, but, boy, what a surprise it was to hear Christine rattle off Pokemon characters, their powers, stage, and how they evolve, on their return from New York. I think they played a lot at Columbia and on the long flight home.   Only a couple of days before his last, while Ben was really going through a lot, he had his cousin Nicole acting as his agent to trade some cards with Jacob.  It was tough, Jacob drives a hard bargain, but Nicole was successful in getting Ben the Latios card he wanted in exchange for three others.   Playing with his family and friends, Ben would be engrossed with the moment, in the game, in the company of the people he loved.   Despite everything that was going on, he was still a seven-year-old little boy.

 

I also learned that Ben did not want to dwell on being sick.  You didn’t go into his hospital room or visit him at home and ask him how he was feeling, or tell him you were sad that he didn’t feel good.  You went in with stories to make him laugh or to gross him out or tell him what his friends were doing.   One day at Lucille Packard, while Ben was looking through a dog book, trying to pick the perfect breed, he got to hear his Uncle Steve tell him the story of how his dog Ellie gave him a present once.  When Uncle Steve was little, he had been lying on pillows in front of the TV, and he had to get up to change the channel, because they didn’t have remote controls way back then.  Then he laid back down, he felt something wet on his neck, he turned to find the wetness had been caused by parts of a jackrabbit that Ellie had just left for him on the pillows.  Ben responded with a great laugh.  He was always eager for the distraction that a story could bring.  And I think he especially enjoyed stories about when the grown ups in his family were kids.  

 

The most amazing thing I learned through all of this was the power of the loving support that surrounded Ben and his family.  A sphere of love developed.  Ben at the center, surrounded by the constant loving care of John and Christine, and surrounding them, the love of Ben’s extended family and friends.  Their family, from near and far, came and took on many roles to support them for these eight months, putting their normal lives on hold to be available for whatever was needed. 

 

And I’m sure you have read the comments pouring in through the blog.  I know that the blog address was being forwarded, and that friends of friends were regularly following the updates and were affected by Ben’s struggle.  I’m sure the actual number of people touched by his story is staggering.  So many people from all over, literally, the world were praying and sending their love.  John and Christine helped Ben to understand that this was exceptional and that all this love was for him.

 

In the spring I was with him one afternoon.  He had a bad headache, I think this was before Christine and John had learned that red blood cell transfusions could help this.  So the lights were low in his room in 2 North.  I couldn’t see his face, because he was leaning forward cradling his head in the crook of his elbow.  I didn’t have a good story that day.  I was keeping my voice low, telling him how my son, his friend, Paul wasn’t listening to me lately, how I had to give him a time out for some reason, that I was frustrated.  I thought that Ben might not be listening to me either.  But I kept on talking.  Then he looked at me, and said, “Don’t you love Paul”.  It wasn’t a question.  He was telling me what was important.  Loving support surrounded him.  His statement shut me up, and I just nodded my head yes.

 

Christine told me that at some point, Ben had thanked them for being good parents. He was also writing them love notes, one on a Pokemon card while they were in New York. Through this ordeal, I think Ben came to really appreciate and depend on the daily expression of love he was receiving.  And he realized it was important to be giving it back.

 

Well, Christine and John and Jacob, you guys have fought along side Ben so hard and for so long, but your battle continues.  I am sure Ben has high expectations of his family, and wants and expects you to get joy and peace and play back into your lives.  Use his example, and play through the pain, laugh at a good story, and leave love notes for each other.  I have faith that Ben’s strong spirit is going to help you through this.  It is going to be hard, but remember that that sphere of love still is still here, with Ben at the center, and the rest of us all surrounding you guys from the outside.

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Ben in WuShu outfit

August 2007

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