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How important is it for humans to be connected with
others while facing challenges in life? That may seem to be a simple
question with a simple answer, but let me tell you, it's far from
simple.
Many of us strive to connect with other families and
professionals across the world dealing with these disorders, but
there are some that choose not to. I won't guess at the reason for
that or sternly judge anyone if they don't reach out to others,
but what I CAN say is that SUPPORTING EACH OTHER
IS VITAL in ALL aspects of life, not just when dealing with
a rare disorder. Yet, you can't be supported or even perceive
that others are offering support if you're not open to receiving
it.
The FOD Family Support was not created to provide
ALL the answers or invincible and proven suggestions to families.
Although we were painfully 'birthed' due to NOT having
knowledge and answers about FODs, we chose to focus on offering
the intangible and often 'inarticulateable' dimension of connection
and emotional support.a connection that crosses all boundaries of
space, time, and all other human characteristics and systems
(i.e. race, religion, politics etc) ~ a connection that is also
presently being demonstrated so poignantly by men, women, and children
across the world after the September 11, 2001 terrorist attacks.PEOPLE
NEED PEOPLE!
[As a personal aside.It was encouraging, as well as
inspiring to see so many men, whom often may feel in our society,
that their masculinity is threatened if they express the emotional
part of themselves, to allow themselves to fully feel and to hug
another experiencing such horrific pain instead of cognitively 'staying
in their head' in order to cope with the totally incomprehensible
events. It was and is an extraordinary example of how HUMAN
SPIRIT and FAITH, HOPE and LOVE can be the salve that will 'heal
one's fractured heart' over time and with much grief work. I
HOPE that men, as well as women, boys and girls, continue this 'breaking
of the shell' ~ it makes for a more REAL and TRUTHFUL and FULFILLING
LIFE! ]
Just as there is a wide and varied spectrum of how
children/adults MEDICALLY present and respond to an FOD, there is
a similar spectrum associated with how individuals/families EMOTIONALLY
cope when faced with a rare metabolic deficiency.
A while ago, I spoke with a new FOD mom that wanted
to hear that things definitely would be okay and I couldn't
100% guarantee that. All I could offer was that most of the time
once a diagnosis and specific treatment begins, and IF it's earlier
rather than later, then the kids usually do okay and create their
own kind of 'normal.' Then on the emotional level, it's up to
the families to work hard at living and coping WITH this
challenge instead of fighting AGAINST it and themselves.
I mentioned the spectrum of how these kids present
and gave examples of how some responded when diagnosed/treated from
birth versus later on (i.e. refer to our Cost Benefit Analysis on
our website's NBS page), some experiencing residual medical complications
with seizures, gtubes etc., and the anxious mom said, 'I don't
need to go there' ~ meaning she didn't want to hear anything other
than positive things.she didn't want to hear REALITY!
I wish I could be ALL 'positive' when talking
with new families, but that's not real life! Yet, being positive
is a very relative state depending on your own context ~ to me,
just GETTING a diagnosis is positive compared to having none!
Life is full of challenges and having a child (or
yourself) with a disorder can present a family with spiraling ups
and downs over time. Hopefully, you'll CHOOSE to PROACTIVELY
take on these challenges rather than be frozen in denial and
wish or pretend they didn't happen to your life or your child's
life!
Soon after talking with this mom, I had another
call from a new family that demonstrated this proactive approach.
They had just gotten a diagnosis the day before and were already
researching information on the Internet and making calls to other
FOD Families with the same disorder.
I also mentioned to them the wide spectrum of presentation
and they acknowledged that possibility instead of dismissing
it as the other family had.I have yet to hear back from that first
family. That's frustrating, but I can't make decisions for
people.they have to CHOOSE for themselves how they are going to
cope and deal with what's presented to them. Some unfortunately
prefer the 'head in the sand' way over the I Am/My Child IS WORTH
ADVOCATING FOR attitude!
It's not about me, or anyone for that matter, stating
cold hard facts in an in-your-face way (i.e. "Your child has an
FOD, deal with it!") ~ it's about CONNECTING COMPASSION and REALITY.I
call it 'Compassionate Realism.'
It's about discussing a family's particular situation
and what the facts are (i.e. results of tests, definite diagnosis,
medical concerns etc), as well as combining that with 'listening
for and hearing' not only the spoken emotions and fears, etc., behind
the diagnosis and 'coping' with it, but also the unspoken ones.the
ones that carry a lot of power.at least until they are voiced and
validated and expressed in a constructive way.
This is where the importance of SUPPORT comes in.instead
of struggling in silence, children/adults can connect and share
those emotions, thoughts, and doubts etc., with other families walking
a similar journey ~ diffusing some of the power of those unspoken
fears. It can't take away your own personal and family challenges,
but it sure does help to NOT FEEL ALONE on your journey.
For those that are 'closed' at this time to support
or connection or facing reality TOGETHER rather than alone,
I will say.there is always HOPE that someday you will
feel safe enough to face your/your child's challenges HEAD ON and
TOGETHER with others in our Family Support Group or with your family
and friends.just KNOW that we will be here when you are ready
to experience that vital and vitalizing connection in spirit!
Deb Lee Gould, Director
FOD Family Support Group
September 2001
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