Memorial Run

   
I have to pause from my recap of the COL to let you know that our friends in The Woodlands are hosting a special Memorial Run for Hans as a Fundraiser for the CNCF.  It will be held in The Woodlands on Nov 10th at Barbara Bush Elementary at 8am.  Cost of the race is $1, plus any additional donation to the CNCF.   It is very special to us that the race will also be a PJ and Toy Drive for the kiddos at TCH! Six years ago on that weekend, many of these same friends hosted the Run for Hans on this same course.  The original Run for Hans brought in over $20,000 that was gifted to us to use in Hans' ongoing treatment.  That money kept us fighting, and it sent us to our very first Children's Neuroblastoma Cancer Foundation Conference in Chicago, 2007.  Having received such a gift just three weeks to the day after first hearing the word "Neuroblastoma", we made a family promise to try and pay it forward and to match the amount of funds raised for our family in eventual research dollars.  We can proudly say that we've since been able to help raise more than that amount with the help of our family and our friends.          

If you would like to participate or support the Run or the Toy/PJ drive from afar, thank you!   You may send a donation made out to the CNCF or a Gift Card for the Toy/PJ Drive to:  Michelle Nolen 26 Shallow Pond Place The Woodlands, TX 77381.  Hans sure loved getting gifts cards!  In our second to last hospital stay we ran out of clean PJs and the charge nurse was able to come up with a pair of donated Lego Batman PJs and I can't tell you how it REALLY saved the day!  Hans liked to shop for toys from Toys R Us, Amazon.com, and Target, and he usually found PJs he liked at Target.  I know the kids up on the 9th floor will appreciate a special treat just like Hans always did.

Thanks to Beth Whiethead!  You contacted me just days after we lost Hans wanting to do this Run.  Thanks to Carmen, Michelle, Jennifer of Silly Nilly, Katie and Little Saints,  Charon, Pizza Tonight!, Dosey Doe, Luke's Locker, Chick-fil-A, and Fast Signs for making this happen.

We still had some donated frequent flyer miles to use up, and we went ahead and used the balance of them to book flights to Houston.  The three of us will be there on race day.

If I Should Fall Behind

Our buddy Sam showed up from Fairbanks, Alaska to play a couple of songs at the Celebration of Life.  Our first song of the night was Bruce Springsteen's If I Should Fall Behind.  He sang and played the acoustic guitar.  Thanks, dear Sam!
Here's a You Tube video of Bruce's version.  Copy and Paste this link:
http://www.youtube.com/watch?v=04mRvBaEku4

Thanks, Jessa, stole this pic from your FB!

I stole this pic from my cousin Jessa!  Thanks.
I am going to piece-meal the program together, so if you are a speaker and you are willing to share what you wrote, please email it to me at kevinandlara@hotmail.com.  Thank you!

Roxie officiated the COL and gave an amazing introduction and opened the evening with Optimus Prime and then our friend Shelley read this poem aloud.  It was Elle's selection for the evening. Her favorite poem of all time. 

“Hope” is the thing with feathers - (314)

By Emily Dickinson 1830–1886 Emily Dickinson

 

“Hope” is the thing with feathers -

That perches in the soul -

And sings the tune without the words -

And never stops - at all -

And sweetest - in the Gale - is heard -

And sore must be the storm -

That could abash the little Bird

That kept so many warm -

I’ve heard it in the chillest land -

And on the strangest Sea -

Yet - never - in Extremity,

It asked a crumb - of me.

COL Part One

Yesterday was incredible.  I want to thank all of our family and friends for making it happen.  Thanks to those who worked, helped, performed, created, celebrated, traveled and showed up!  I will try to share bits of the event on this blog over the next several posts.

About three days after we lost Hans it occured to me that his story was more like a fairy tale than anything else. I wrote this to him, and I shared it at the COL via audio recording.

Hans, you were a Fairytale,

A wise, brave boy.

With sea green eyes,

and a beaming smile.

Your blonde curls sprang like life itself.

Not only physically beautiful, you were smart and capable,

kind and gentle.   
You loved animals and you understood machines. 

You were our special boy.

Where but in a fairy tale do we find our charmed boy so cursed by fate and odds?

 You set out with no choice but to embark on your Epic Journey.

 The Journey was yours, and we were but there to help you through it.

It took you to faraway lands to find the best doctors.

And it opened the hearts of everyone you knew; 

your family, your friends, your neighbors.

They helped you and sent you on your way 
with miles and dollars and wishes and hope.

Where but in a fairytale was a boy blessed with so many Fairy Godmothers?

Ladies and gentlemen of the land fell for you everywhere you went.

You were covered in prayer and love and many spoils.

From near and far, people sent you foods and presents.

We were simply blessed to be the family you were delivered into-

 a family somehow perfectly equipped to fight just for you.

Your dad worked hard to secure your every need and want.

The two of you were bonded in pride and joy, and work and play.

And as your mom I had the good fortune and simple luxury of caring for you.

You were my first priority and I was, of course, a devotee to my task.

Where but in a fairy tale does our boy have a sister so fair?

The sister that whole villages think not twice of caring for.

While we were tending to you,

Lists of lovely ladies came to her aide. 

She was able to live her little girl’s life

and all the while be there for you at the end of the day.

You graced us all with your good, sweet love,

your fight and your focus. 

You were incredibly intentional and hard working at your task.

And though we found to the best doctors in the land,

No amount of love and effort would yet keep you here with us.

Science is still a few clicks of the rubik’s cube away...

We have to trust with Hope and Faith

that we in fact have a happy ending, we simply cannot see it.

The happy ending will be revealed as we join you once again.

Your fairy tale shall have one thousand happy endings.

Every one you’ve ever touched will keep 
a little bit of your magic burning within them.

Your spirit will live through us and be a force of goodwill, authenticity, 
and childlike devotion to those we love. 

Thank you for being our special boy.

We will love you happily ever after, Hans.

Celebration of Life

Hans' Celebration of Life will be held at The Northgate Community Center in Seattle, WA on Saturday October 20th from     4 - 7pm.  We are planning a buffet, a program, a balloon release for Hans and a game of kickball, because 9 year old boys should be playing kickball.  So, bring an appetite and a pair of kicks.

Believe me, Hans would want everyone to wear whatever they like.

Thanks to all my friends and family who are helping us get ready for this celebration.  Special thanks to my Aunt Pati who is hosting the event at 'her' community center.

I have been thinking about this optical illusion. I find myself focusing on all the positive wonderful things about Hans and his life. I remember how beautiful he was first and foremost, how sweet and loving, how sure of what he wanted in life, how full he was of unconditional love for the people in his life. I remember how he never complained about his health challenges. He got so many lucky breaks along the way with his treatment - his tumor was for a long time mysteriously responsive to his therapies.  Focusing on the lovely aspect of Hans' life is focusing on the young woman in the picture above.

The tough stuff - the horror of his diagnosis, his terrible treatments and life-altering side effects,  the odds stacked up against him. His treatments were relentless.  He was in many ways sidelined from a 'normal' childhood by this disease.  Focusing on the tough stuff is focusing on the aged woman in the picture.

It seems that I can shift my focus from one aspect of his life story to the other. Just like in the picture above.

But, in reality they are both there and they will always be.

Perhaps the tough stuff makes the good stuff even more beautiful. Perhaps the beautiful stuff makes the hard part even harder. The reality is they co-exist together and always will; the yin and yang of life.