Saxon James Kiesewetter - Online Memorial Website

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Saxon Kiesewetter
Born in United States
13 years
634488
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Do we tell them they are dying?
Date: Sat, 7 Feb 2009 18:57:42
To: <E-SARCOMA@LISTSERV.ACOR.ORG>



Dear Group,
In my situation dealing with Saxon (even though I am a nurse who medically can
and does recognize impending death in others ) I did not have a death
conversation with Saxon even though I knew in the last few weeks emotionally and
spiritually  that  he was dying.  At least most of me did. I still held HOPE in
my heart but my mind knew that  we were not going to be the winners.  Reality is
the hardest thing to accept.  For so long we manage to keep it at bay and we get
good at it.

God in his power can  make us the winner on earth if he chooses to but he chose
to make my Saxon the winner in heaven.  When we were at the end of stem cell, a
couple of days before we were actually released to home, Sax looked at me square
in the eye and with such a tired , desperate look he said "Momma please dont let
me die."  He broke my heart in that one statement as I knew he was glancing at
reality that he and I preferred to keep locked in a deep, buried hole somewhere.
( We knew at the time that he relapsed even before the stem cells were infused
and after they started the high dose chemo to wipe him out)
I replied, Saxon, mommy wont let you die. That was all I said and what I meant
deep in my heart and without his words stating so, I knew that what he
understood was that I would carry the torch of hope until the end. He knew I
would do everything in my power possible to keep him from dying. We had a bond,
a trust and unspoken way of communicating quite often.  We didn't always have to
verbailize everything we felt. (Many of you  know what I mean.) He knew and I
knew that  he was very much aware that kids died on the floor and often. I did
choose to give him the news at times in my way as a mother to in some way
prepare him to understand that this is a fight , a battle that doesnt always
turn out the way we want it to.  Realistically, believe it or not we both needed
to know that. We all know that  they all are beyond their years, no matter their
age, begotten from  this disease/ routine that they must endure.   Saxon, like
so many  had incredible faith in God and we put all of our chips there, in God's
basket like so many others do. 
That being said, I waited with baited breath to see if he would bring up the
dying topic after that and I wondered  always what I would say to him if he
did.  He never did. I thought he was going to on the day that he died as he
seemed to almost want to speak to his older brother or myself but he never did. 

He merely woke up that morning at camp and as some of you may remember, I wrote
before that he said, "Momma God said I will walk today."   I looked at him and
he did not look like he was going to get up and walk and  I was almost in awe of
what to expect.   However within minutes it dawned on me that the day would
bring something I wasn't ready for. He was very quiet and his expression and the
look in his eyes was that of being far away in his mind/thoughts.  This is why I
thought perhaps he would share more, offer something of his mind set,or fears or
what ever.
Again I think he may have but others seemed to enter the trailer when, as my
older son observed Saxon seemed like he was on the verge of  sharing something
but the timing never seemed perhaps right to him.  In the end I think he decided
to protect us or even perhaps he held out to the end for the presentation of the
miracle. 
The only time that he betrayed his fears or confusion of what was happening was
after what I call a mini , very, very  quick type of seizure where he looked at
all of us with a wide eyed, but frightened or shocked look and then he slipped
into a calm, state where he was shallow breathing and I felt he was only half
here and half of him had crossed. 
Now I often wish I he would have let me be his protector in death and not the
other way around. I believe he thought he was sparing us some unnecessary
torture.  It's difficult to not go back and at times second guess. I've read
hundreds of stories on a "Cancer Kids" website which has a link to  stories of
many of these fallen heroes and their families.  
This has been my therapy as I realize now that over a decade and greater, many
mothers, fathers and families have gone down this road and have so generously
provided their feeling in paper/diaries about their experiences and for that I
am thankful as I feel that I am never alone in my sorrow or on my own grieving
planet.
 I know realize how many countless others have been forced out to  develop a
new and different life with a somewhat new identity, to find a new definition of
life and of ourselves. Many, so very many  are so  similar to  myself ( like
some differentiated species forced to morph if you will, into something stronger
than our former selves in order to find a way to live or exist) and our minds
and voices  echo a great deal of the same thoughts , feelings and experiences 
encountered on this journey.
 For me it's 1 1/2 years now that Saxon has passed which I can hardly believe,
it's still so unreal to me, very strange that I would even say that but it is. 
I am always looking for a way daily to get through. I am still confused as to
what "getting through" actually means  and I'm not sure I'll ever know but
because of other's  stories and what we share here I am more aware of certain
things.  
One being that our "cues" in the cancer living process as well as the cancer
dying process  does come from the suffering child or dying loved one.  We just
need to try to be open enough to recognize them and interpret them. Sometimes we
are not.  We are fogged over, bogged down by the sheer weight of the entire
situation and dragged through emotional upheaval. Maybe the confusion arises
because what they need from us  is more than we are prepared to give or less
than we are prepared to offer. If that makes any sense.  Sorry for the big long
letter but sometimes these things need to leap out of our beings on this site
and pardon me if what I have stated is offensive to anyone, it's just my
thoughts, pure and simple, nothing more.
Ma God's love or what ever higher power carries each and every one of you
through to continue to fill you with the hope that you need, the insight to help
others and the fortitude to carry on.
Diana, forever and ever Saxon's mother 7/17/93--6/2/07
 

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