Eileen M.

--- Jon and Rue Kream <skreams@...> wrote:

I can't
> think of a situation in
> which carrying my child would not "hold him".

Your child was not my child. And you were not me.

But if you use your imagination, I think you *can*
think of just such a situation.

Think of a situation in which you are recovering from
cancer which you avoided treating for seven months,
against doctor's recommendations, because you wanted
to give your baby the best chance possible rather than
aborting him. Imagine that after he was born he was
the most beautiful thing you'd ever seen, that you
loved him with all of your heart... and that twenty
minutes later his heart stopped beating and he stopped
breathing, and that the doctors rushed in and snatched
him from your arms, and that for nearly an hour you
thought he was dead.

Think of a situation in which your child's immune
system was not normal, so that he could not be cared
for by someone else or go to a public place without
fear that he would be killed or damaged by a simple
cold or flu virus. Imagine he had seizures, so that
you had to watch him and worry about him all the time.

Imagine that his blood sugar would not regulate, that
you had to poke him with needles to check his blood
every two hours until his tiny toes were like
pincushions.

Think of a situation in which you have degenerative
spinal discs and 'benign tremors' (think of
Parkinsons, except that the weakness and tremors
happen when you are trying to use your muscles rather
than when you are at rest); imagine that these
conditions existed relatively unnoticed and
undiagnosed until the trauma of your pregnancy,
cancer, and the birth of your child started a chain
reaction that severely worsened the symptoms. Imagine
that you had watched your grandfather become entirely
crippled, unable to even feed himself, with this same
condition, and that now your doctors told you that
this was a likely fate for you sometime in your
future. Imagine that you had been an artist, but now
were unable to control your hands enough to do your
work. Imagine you were dealing with this change in
your life at the same time that you are dealing with
all these other things.

Think of a situation in which your husband was working
two full time jobs in order to pay for your and your
child's medical bills, so that you are acting in
effect as a single mom. Think of living with the
knowledge that one more serious illness on either of
your parts would leave you homeless.

Think of a situation in which your life seemed to be
just one long round of doctor visits, and that the
doctors couldn't tell you if your child would ever
love you, or talk, or look at your face, or sit on
your lap without struggling and screaming. Imagine
that in the scant moments during which your son slept,
you spent every waking moment searching for something
to help him. Think of finding something after two
years of searching, and doing it even though your
toddler screamed as though he were being boiled alive
for the entire duration of each treatment, and the
doctors told you that it wasn't likely do any good at
all; imagine that it was agonizingly painful to you
and left you with crippling chronic back pain and more
damaged discs.

Think of a situation in which you felt horrendously
guilty the whole time you were applying this
treatment, because your child so obviously felt that
you were torturing him for no reason, and you weren't
so sure he wasn't right. Imagine that the horrible
thing you were doing primarily consisted of simply
holding him in your arms (with a little eye contact
thrown in for good measure)... and that he would
scream and struggle like a trapped animal for two
hours straight, so long and hard that he would fall
asleep every twenty minutes or so, and then wake up
screaming again... Imagine that for a stretch of time
(seems like forever) you did this for several hours a
day.

Think of a situation in which those conditions might
conspire to make it difficult to always perfectly hold
on to a wildly struggling and fast-moving child,
especially while also trying to walk across a crowded
clinic parking lot.

I don't have to think of it. I lived it. My son and
husband lived it. Our extended family lived it. We
still live much of it, to some degree or other. But
some things are now much, much better.

I've had enough drama to last a lifetime. I've
learned to stop making decisions based on what 'most
people' think... most people thought my child would
never be capable of demonstrative affection, or
'normal' mental functioning. He's not *average*, but
he is the most affectionate, demonstrative,
sweet-tempered, sensitive eleven year old male I have
ever met. He has trouble interpreting people's
expressions and body language, and some social cues...
but he helps others who are in trouble, is generous,
and is a gifted writer. He is the light of my life.
And he is extremely demonstrative, even in public,
with his old mom. He knows it isn't Cool. He doesn't
care. The people who have known him from birth know
he's a miracle.

So does he.

__________________________________________________
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scrunchy

Eileen,

Thank you for sharing your story. After reading this, I am convinced
that you have more courage than most people I have ever met. Please stay
here. Your perspective is different than mine, because you are you. You
and your son are miracles. I appreciate and respect your comments very
much.
Norma

"Eileen M." wrote:

> Your child was not my child. And you were not me.
>
> But if you use your imagination, I think you *can*
> think of just such a situation.
>


[Non-text portions of this message have been removed]

A

Eileen,
People like you always really help me with my life. I am so in awe of people
who can turn hardship into positive. I am very bad at that, but try hard to
do it.
A positive attitude is EVERYTHING! Thanks for reminding me once again.
Your son is very lucky, as probably you are too....
Thanks for sharing.
Ann