My Shoes

I wear a pair of shoes
They are ugly shoes
Uncomfortable shoes
I hate my shoes

Each day I wear them and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step

Yet, I continue to wear them
I get funny looks wearing these shoes
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs
They never talk about my shoes
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.

But, once you put them on, you can never take them off.
I now realize I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.

Some have learned how to walk in them so they don't hurt quite as much.

Some have worn the shoes so long that days will go by before they
think about how much they hurt

No woman deserves to wear these shoes

They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

Author unknown

http://www.achildofmine.co.uk/My-Shoes/I11.htm

On September 7, 2012, Taylor Swift debuted her new song "Ronan" on the Stand Up To Cancer Special aired on all the major U.S. Networks.  Ronan was lost to neuroblastoma just before his fourth birthday.

In Memory of Ronan Thompson: May 12, 2007 - May 9, 2011

http://www.theronanthompsonfoundation.com

http://www.rockstarronan.com

Changing very few details, this song could easily be called "Darrel".

Miss You Little Man. Love You To The Moon and Back.

I remember your bare feet down the hallway
I remember your little laugh
Race cars on the kitchen floor
Plastic dinosaurs, I love you to the moon and back

I remember your blue eyes looking into mine
Like we had our own secret club
I remember you dancing before bed time
Then jumping on me waking me up
I can still feel you hold my hand
Little man, from even that moment I knew
You fought it hard like an army guy
Remember I leaned in and whispered to you

Chorus:
Come on baby with me
We're gonna fly away from here
You were my best four years

I remember the drive home
When the blind hope
Turned to crying and screaming, "Why?"
Flowers piled up in the worst way
No one knows what to say about a beautiful boy who died

And it's about to be Halloween
You could be anything you wanted 
If you were still here
I remember the last day when I kissed your face
I whispered in your ear

Come on baby with me
We're gonna fly away from here
Out of this curtained room in this hospital
We'll just disappear
Come on baby with me
We're gonna fly away from here
You were my best four years

What if I'm standing in your closet trying to talk to you?
What if I kept the hand me downs you won't grow into?
And what if I really thought some miracle would see us through?
But what if the miracle was even getting one moment with you

Come on baby with me
We're gonna fly away from here
Come on baby with me
We're gonna fly away from here
You were my best four years

I remember your bare feet down the hallway
I love you to the moon and back

Five years ago today, we said our final goodbyes to Darrel.  It was a day I'll never be able to forget, and a day I don't want to forget either.  The pain of losing him has never quite settled, and it still lingers, and often haunts me:  his rapid downwards spiral that last week culminating in the horrible terrors he faced as both his mind and body betrayed him in those final hours; the internal and external pressures that were unnecessarily put upon my family by people who didn't know when to keep their opinions to themselves...these things need to be  remembered.  At the same time, the coming together of family, friends, community, and strangers from near or far to honour all that Darrel was and could/would and  should have been...these things need to be remembered as well.
 
To forget any part of what my son went through, or how he conducted himself at each and every step of his battle with neuroblastoma would be deemed to diminish a short, but extraordinary life.  Darrel faced every morning the same way he concluded every day...with a smile that could warm the coldest of hearts, and a determination that would not bend against odds that most adults could not even comprehend enduring.  There was never a thought of giving up...never a thought of surrender.  This is how my seven year old boy stood up to cancer. To forget any part of this, regradless of any emotional pain and anguish on my part...would be unthinkable and unforgivable.
 
Like most parents who have lost a child, I've become better over the years at hiding much of what I'm feeling inside...most of the time.  I've met lots of new people over the past 5 years, be it at social gatherings or at work, that probably have no idea what happened to Darrel and my family.  To dwell too much on the past every moment of every day would make it impossible to function on a daily basis, but this certainly does not mean I'm "over it". 
 
Losing a child leaves open a wound that will never heal.  If a person loses a physcial ability or limb, there doesn't seem to be a rush by those around the individual for them to "Get Over It".  There is almost always compassion and understanding, as others try to empathize and relate to what has happened.  This is not the case for us parents.  We are supposed to "Get Over It" according to  someone else's timeable.  This is not how it works!! We learn and we adapt to  the "new normal" as best as we can, but "getting over it" is a luxury and option we will never have.  While nobody can relate to how this feels without going through it themselves, they should at least not be so quick to judge how those of us that have chose to deal with our loss.
 
Much of my free time is spent on Facebook or Twitter attempting to spread awareness for childhood cancers in general, and neuroblastoma in particular, or writing Blogs such as this on Darrel's Playground or other sites. Because of time and other personal commitments, I do not always participate in as many events as I might like to, but I still think what I do does make a difference.   At the end of the day, it helps keep my sanity (I think), which after all we've been through, is an impressive accomplishment in itself.
 
In addition to sharing with other parents through Blogs and other Social Media, there are online Support Groups available specifically addressing Child Loss.  Like Support Groups you can physically attend, it is often more important to listen to others than personally contribute all the time.  People in our situation really need some empathy from those around us...not pity, not 
fear, and not being treated as an outcast by those we once called friends.  If talking to people who I probably never meet face to face helps us both mutually get through the days and years ahead...so be it.
 
No two situations are exactly the same when it comes to childhood cancer, regardless of type of diagnosis, place of treatment, or the financial situations of the lives turned upside down by the disease.  There is no one doctor, book, video, or meeting where you get all the answers to your
questions, as each and  every day brings endless new questions...and some of them may never properly be answered. 
 
With Darrel, like all other parents, we tried to make the best decisions we could, for our son and family, when they needed to be made.  You can not make neither a long nor short term plan, as everything can (and usually did) change in an instant.  To say that each day brought a new adventure is putting it too mildly.  We do not need others to second guess these choices that we have made, because, regardless of the outcomes, we are already continually
re-examining every single moment in our own minds each and every day, whether awake or
sleeping.  In addition to losing our children, this a a never ending battle we must face.  The "What Ifs" never have, and never will entirely go away.  The dreams Darrel had, and we had for Darrel, while never given the chance to persued, will not be forgotten. 

Five years ago today, I held my seven year old son's hand as he took his last breath...
 
NEVER...EVER...TELL ME TO "GET OVER IT"!!
 
Love and Miss You Little Man