Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.

Monday, July 30, 2012

Convergence

One year ago today Willem began feeling ill.  He went to bed complaining of muscle aches and we shrugged it off -- reasoning that it was a result of the running around he did during the family day at my unit.  But alas; it was not... It was the beginning of our family's hell.

As I have mentioned, I am committing myself (as much as I can, and, at least for the now) to continuing this blog.  I also mentioned that I was going to attempt to begin a new story; a story of Willem's life and what it was that made him so special to us all.  I cannot now promise that I will ultimately achieve this goal yet I can promise you this: you will come to know Willem if you so choose.

To begin my movement toward this goal, I have decided that the best time to tell the story of Willem's beginning is this very day: at the one year anniversary of the very moment I feel his health began to decline and ultimately take his precious life.

I feel it necessary to throw in a disclaimer here:  From this moment forward this is now my journal and my thoughts and feelings, however inappropriate they may be perceived, will pour out.  Uncensored.

Saturday, July 28, 2012

Touching and So Very Sad


Liliana wanted to know what was was in the box that looks like a book.  We told her that the box contains Willem's ashes.  Not long after, and the house very quiet, I encountered this touching and very sad moment.  Through trembling hands and blinding tears, I endeavored to capture this image.

This is my attempt to continue the blog but speak less of our pain and daily unbearable suffering and more of Willem's good days and what it was that made him so special to us all.

I have been told, by those who love and know me, to keep writing.  I will try.

Monday, May 21, 2012

FIRST DREAM

Willem's dying body lay in my arms and I find joy in running my fingers through his hair and he speaks to me.  I smile and find an immeasurable amount of joy in realizing that, hey, Willem isn't dying after all; he's got long hair where once he had none. He's getting better!  There's hope again and my boy will be fine!

And then I awaken.  I awaken with the taste of joy still fresh on my tongue and the horribly bitter taste of reality quickly follows.

One deep sigh and a small tear in its wake.

Monday, May 21, 2012... I want so badly for my heart to fail -- anything -- I do not wish to live.


But I have to.  I have to.

Sunday, April 29, 2012

Wrung

There is a pain involved with giving away some of Willem's possessions:  The pain is usually offset, somewhat, by the joy in the faces of the children receiving the item.  I was walking down our street with three pillow pets in my arms when three neighbor children yelled, "hi" to me from behind a fence.  I, on a whim, asked if they wanted a pillow pet -- they screamed in delight as they ran toward me; one saying that she's never had a pillow pet.  I asked only that they take good care of them.

The effect of of giving away that which is part of Willem, to those who are brought such great joy by the gift, is much like that of a soaked cloth being wrung dry; one effect nearly negates the other. Nearly.  

I feel a tremendous amount of guilt in reallocating Willem's possessions but I hope - I hope so very much - that Willem is somewhere, watching me, saying, "Nicely done daddy.  Nicely done."

Friday, April 27, 2012

HUMBLED

Humbled.  Truly, and, unequivocally, humbled.  These are the words I have for the Celebrating Willem fundraiser held on April 19, 2012.  There is much that need be said, and many that need be thanked. I do not wish to make light of the fact that money had been raised by saying that so much more than money was raised -- yet the fact remains that so much more was accomplished than just raising money.

I will have much more to say on this subject, perhaps, in future writings for much is happening; transformations are taking place; ideologies are changing; "...friends shaking hands..."

It is my understanding that there is much desire to know how much money was raised via the fundraiser, and I completely understand that it is because of the shear magnitude of the event -- I get that, and I would wish to know as well.

Well... The numbers are still being tallied, quite frankly, and the exact amount is not yet known.  I can tell you this, however, the number of people (I was told) that showed up was around 800 (600 adults and 200 children) -- it boggles the imagination.  It boggles my imagination.  I can also tell you this:  the goal was to raise $10,000.00 and the fundraiser far exceeded this amount; quite possibly tripled it. One donor agreed to match the amount made by the fundraiser up to $5,000.00.  It has been decided that this amount will be donated to P.O.R.T. and to Child Life Services -- Willem's favorite people at Helen DeVos Children's Hospital. There will also be a sizable sum donated to an HLH research foundation.

I feel it important to inform the reader that, apart from being the parents of Willem, neither I or Erin, were involved in the fundraiser -- we were kept out of the loop and had absolutely zero involvement in its planning or design.  Only now am I being brought up to speed.  What an amazing feat and what an amazing event.

So, on that note, I am still deliberating on whether it is prudent to divulge the exact numbers when they are given to me.

There will also be a separate post of much needed thank yous.


Friday, April 20, 2012

One Month Later

Willem passed away one month ago yesterday -- it still seems like yesterday.  I relive the sounds, the smells, and the visions over and over every single day.  The events conspire to lie on my chest and hold me horizontal to the bed.  I acquiesce.

It had been mentioned to me that I should post my words to the attendees during the ceremony -- for those that could not attend.  One month later, I am able to do this.  Here is what I said:

God give me strength.  


Willem Grey Radosevich is my son.  


I have been told that I am a great writer yet I have struggled to find the words to give this celebration all it deserves -- all that Willem deserves.  I can only say this thus far:  


I was supposed to be Willem's teacher; his guide; his mentor; his spiritual leader, and his hero.  I was supposed to be all of these things.  Instead, Willem became all of these things to me.  


Willem is a warrior and he is my hero.


The Radosevich family has a tradition:  My grandfather said it to my father before he went to Vietnam and my father said it to me before I was supposed to go to Afghanistan: We do not say 'goodbye;' we say 'see you later.'  


See you later son.  Mummy and daddy love you and we'll miss you so terribly much.


These were my words.  These words came to me fifteen minutes before the ceremony and my hands trembled and I cried as I wrote them.  It was difficult to see the words through my tears.

Willem's ceremony was the most beautiful ceremony I have ever had the privilege to witness.  It began with Willem's scout troop conducting a flag ceremony. My brother spoke to the attendees and posited this question, and I am paraphrasing here:

...What can we do for Thomas and Erin?... Here's the answer: They've received an enormous outpouring of support recently and I want to challenge you to bottle your urge to give all of it today; bottle it up, and instead of pouring it out all at once, pour it out over time.  Erin and Thomas will need you just as much in the weeks, months, and years ahead... 


Syd, "Ba," Willem's grandpa, gave an amazing account of Willem's life and expressed how wonderful Willem was (is): he was inquisitive, intense, intelligent, loved life...  Syd did an amazing job of summarizing the love Willem received from family and friends and the quality of life that Willem was able to give all of us during his too too short time on this planet.  Willem did more living in his ten years than most are able to do in a lifetime.

It was a beautiful celebration of Willem's life.  My favorite parts were the flag ceremony, the monument to Willem that had his Webelos hat and scarf (which made me cry intensely) next to a large photo of my smiling child, and the branch with all of the colored oregami that was made by the students of Meadow Brook Elementary.

I could not possibly capture the splendor of the event in words; one would really have to have been there.

Tuesday, April 17, 2012

No, it DOESN'T make any sense

"No... It doesn't make any sense.  It will never make any sense.  He was loved; he was special; everybody loved him... He was only ten.  It doesn't make any sense -- and it never will.  Period."

-- Erin Weston.  Willem's mother.  My wife.  My strength.