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inspired by and in memory of Ryan
There is ALWAYS hope.it just may not be or
look like we feel and think it SHOULD be!
Many of my articles are fueled by my conversations
with parents, just as the 'Find the Light in the Darkness' article
was (on our site, Coping and Healing page) ~ where a professional
wasn't going to tell a new FOD Family about our Group because she
felt our newsletter was 'too depressing' for the family to read.
In other words, this professional was basically telling this family
that it's HOPELESS to find any kind of 'good' support out there
because there isn't any at this time! She was making decisions
for this family ASSUMING they wouldn't want to read about LIFE and
REALITY and all because it was too depressing for HER! Of course,
there's support ~ it just doesn't 'fit' what others perceive as
supportive ~ which to them may mean, "Let's not talk about death."
Trying to protect families FROM reality as well as DENYING them
their right to decide for themselves what is supportive is WRONG.
Just as wrong is when someone tells a family that,
"It's no big deal, the treatment is very simple. We have this all
under control.No need to overreact." What that does is dismiss
or minimize the seriousness of the disorder, possibly leading
families into denial or thinking that they REALLY don't have to
be concerned. You may think that doesn't happen ~ but it has and
it does.
Hearing that message from a medical authority, on
another subconscious level, also seems to magically 'absolve' parents/grandparents
for having passed on a defective gene. That may sound like a bunch
of psychobabble but let me tell you, I've spoken to enough families
over the last 11 years to hear 'guilt' even when the words aren't
actually spoken!
None of us wants to think that we are responsible
for our child's disorder. Of course, when you put things in
context and realize that NO ONE knows for sure which genes
will be passed on and in which combination, it's totally
unrealistic to think we're responsible for knowing that we are carriers
(since diagnosis is often AFTER newborn screening, an episode
or a death and BEFORE we know we're carriers!) or even when
we DO know, we need to remember that there is MORE of a chance
that EACH child WON'T have a disorder (75%) versus having it (25%).
Waiting for some outside entity to tell
us it's no big deal or to absolve us of guilt or fear is NOT what
HOPE is about. However, dealing with those issues of guilt
and fear/stress (discussed in other Coping and Healing articles
on our website) is a highly PERSONAL PROCESS that takes time
and a lot of internal work and it CAN impact how you view hope
for the future.
Sometimes that can be done by yourself, but in some
cases it may help to talk with a counseling professional if they
are causing concerns in your life. This is getting away from my
main point but in a strange sort of way, this type of message
almost skews hope at the other end of the continuum ~ implying
there's hope for your child and future children, because "It's no
big deal!"
There's hope all right.it's just NOT because
it's "No big deal!"
When a family hears a diagnosis of a rare disorder,
the initial hope may be for a cure. However, as more information
is gained and realizing that there is no cure, that hope may be
readjusted to being able to treat effectively. And depending
on the situation, that hope may need further 'readjustment' as time
goes by and experiences change.
But what happens to hope when you hear that your
child is going to die because there is no effective treatment so
"Just go home and enjoy your child while you can." Statements
like this have been made to some of our families ~ talk about blasting
all hope (according to the 'normal' definition/use of the word)
for this family into the stratosphere! That professional or any
person for that matter may be stating a 'cold fact' based on what
few cases have been seen of a very severe form of an FOD, but HOW
that 'fact' of inevitable death is conveyed has a HUGE IMPACT
on how a family perceives hope!
Having experienced various transformations of hope
myself (when we were given Kevin's MCAD diagnosis I/we IMMEDIATELY
thought he was going to die suddenly as Kristen had, until we gained
more information), I try to compassionately convey to parents
that have just been given that heart-wrenching prognosis that hope
can be perceived in different ways.for not only the benefit of their
child, but for their own present and future coping and dealing with
their child's (or other loved ones) condition, as well as
death, whenever that may be.
Parents often feel so helpless AND hopeless when
they hear a prognosis like that ~ especially when it's given
in such a detached and many times unemotional way. Parents have
told me that they feel as if the doctors and others have "given
up" on the child and family. Now, before you jump all over me
about Drs sometimes being detached and cold, I realize that SOME
may present that way to really 'protect' themselves from feeling
too much and getting attached ~ if they get too attached they might
not be able to do the kind of work they do. I understand that thinking
~ however, that still doesn't mean that the content of a devastating
message can't be given in a more compassionate and caring way. 'Bedside
manner' DOES make a difference!
I'm here to say that despite what the eventual and
inevitable 'outcome' will be HOPE IS STILL POSSIBLE.yet in a
different way. It's not a matter of debating whether knowing
ahead of time is 'better or easier' than a sudden death ~ that isn't
the point. The point is if you can work through your fear, anxiety,
guilt, and other emotions of grief instead of focusing ONLY on the
'inevitable outcome' that was devastatingly placed before you, you
can take each precious moment in the PRESENT and cherish it NOW,
so those memories will be with you to help you in the FUTURE.
You can also try to make your child as comfortable
as possible during this time ~ families have sometimes been 'advised'
(directly and indirectly) from having certain procedures
done (i.e. gtube) because "it won't do any good" ~ but if
it makes your child more comfortable instead of fighting for every
ounce of energy or strength for days or weeks or years, than it
WILL DO SOME GOOD! If you can embrace your circumstances
and your child from THAT perspective, it opens
you up for channeling some of your heartache in a more HOPEFUL way...and
benefiting you and your child in the process. Hope CAN BE transforming
for all involved!
Intellectually acknowledging that yes, a death may
happen soon, LOOKS like all hope is gone.but it really isn't. Saying
that there's absolutely NO hope is a false statement to me.there
may be no hope for an absolute physical cure of some disease but
that doesn't mean that ALL hope in ALL realms is nonexistent!
When you perceive hope 'wholistically' you become
more open to other meanings for yourself. By not just 'staying
up in your head,' and experiencing what is happening with your
mind, body, AND spirit ~ you will SEE how hope can be transformed
from the darkest of darkness to a new kind of 'lightness.' It
certainly may not look or feel that way the moment you hear a shattering
prognosis, but over time, it IS possible if you BELIEVE it's
possible.I KNOW firsthand it's possible!
Hope comes in many 'colors'.I happen to be
drawn to 'yellow' (as evident by our pamphlet, card, and
'my rose'). For me, it brings me that light and strength when
the 'shadings' of hope may not look so bright. Every time I see
or think of a small yellow rose, memories of Kristen flood my
being and in a strange sort of way I draw energy and HOPE from that.
As odd as it may sound, THAT is what the true power
of 'mystery' and spiritual connection is all about and it CAN
have a transforming effect on the rest of your life.as well as your
family's life!
On that note.I'll end this as I began ~ There is
ALWAYS hope.it just may not be or look like we feel and think
it SHOULD be!
Allow YOUR more enlightened vision of HOPE
to transform your own lives.
Deb Lee Gould, Director
FOD Family Support Group
July 21, 2001
Kristen's 16th 'anniversary'
(July 2001 FOD Communication Network Newsletter)
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