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One year after Kristen died suddenly from what they
initially called Reye's Syndrome, Kevin was born. Kristen is NOT
here because her MCAD was UNDIAGNOSED and Kevin IS here because
his MCAD was diagnosed AT BIRTH ~ which is when ALL children
should be tested! At age 13, Kevin is strong and intelligent
and very active being a teen! We all KNOW how THAT can be! And we
have Brian (11.5, MCAD carrier) coming up quickly on the teen scene
as well.
And to think it could have been so different if
14 years ago we KNEW about MCAD! Because it was, and still
is to some degree, an unheard of disorder among MANY professionals,
when we heard Kevin's diagnosis we were devastated and frightened
because we immediately thought it was another 'death sentence.'
We felt Kevin would get ill and die.
It wasn't until we gained more information by traveling
to see Dr Roe and gaining daily experience of giving the Carnitor®
and making sure he ate often that we moved from perceiving his disorder
as a disorder and NOT as an illness.
After the shock of hearing his diagnosis finally
wore off, we CHOSE to view his disorder as a FAMILY CONCERN,
not Kevin's problem. We were going to deal with this as a family
and not try to make Kevin feel like he was so different, even though
his disorder IS different than what most have heard about.
Even though we as a family chose to perceive his
MCAD this way, oftentimes the outside world had a completely different
view. At first I would just fume when people would say "He
doesn't LOOK ill." And I would tell them (taking deep breaths
and trying to stay calm!) "He's NOT!" He has a disorder
that we have to watch closely on a daily basis, but it doesn't
have to overSHADOW our lives as doom and gloom.
We CHOOSE to use ACTIVE, not passive
words ~ words that TRANSFORM and ENLIGHTEN ~ instead
of darken and cause one to stay stagnant. I used to get upset (actually
I still do!) when people would say parents should just ACCEPT their
child's death (or diagnosis) and just move on. Yes, moving on IS
important and it takes a great deal of courage and grief work, but
I, speaking only for myself, certainly DO NOT ACCEPT Kristen's
death! And I don't mean that I deny it.
If you recall from the last newsletter I referred
to what I call 'residual grief reality' ~ I don't believe ANY
parent ever FULLY ACCEPTS a child's death...that's part of their
new reality. Accept is NOT an acceptable word to me and for
how I see my grief and working through it. It conjures up for me
a "Get with it, Deb, and get over it" perception ~ not
one that I will own!
I prefer to use the word ACKNOWLEDGE over
accept. I KNOW and UNDERSTAND that Kristen died from undiagnosed
MCAD (and I KNOW Kevin has MCAD). That doesn't mean I HAVE to
ACCEPT that in order to grieve in a healthy way! People can
argue and say that I'm playing with words ~ I'm not ~ I'm just trying
to express myself with words that have more meaning to me and grasp
how I SEE and HONOR my FEELINGS and THOUGHTS about life and
loss and death.
If you look at your own life, you can probably trace
back where your own beliefs about life, adversity, loss and death
were developed ~ and those early beliefs, role models, religious/cultural
beliefs and rituals, etc. play a part in how you use language and
how you act out those words in behavior. My 'loss history' started
very early...as a 3-year-old with 5 siblings under 10 years old
and a mom dealing with the sudden death of her husband/my 'papa'
at age 36! I'm sure many of you have been there yourselves and
it most definitely has an impact on how you SEE things as you grow
up and how you grieve (if you allow yourself to grieve) when a child
of your own dies or has been diagnosed with a genetic disorder.
Kevin DOES have a chronic disorder that
will be with him for a lifetime, but that doesn't mean he is
ILL, as I mentioned before. He may have some days where he gets
sick, and we don't take those lightly, but we try to keep them in
perspective. We make sure he gets what he needs, we know what we
have to do and we do it! Overall on a daily basis he is as ALIVE
as any of us! Ask his brother, Brian!
Don't get me wrong ~ I'm not trying to sugarcoat
these disorders or reality by using "New Age" type words.
I am just sharing with you how I SEE things and which
words I CHOOSE to use to explain my vision
of MY reality and how it's made a difference
in how I cope with MCAD and the ramifications of it going UNDIAGNOSED.
The point I'm making is that no matter what adversities are 'thrown'
at us, we STILL have a CHOICE in HOW we perceive those circumstances.
It has been shown in research (in my own unscientific
words!) that those that perceive the cup half full rather than half
empty get through adversities in a more positive manner and are
probably healthier for it! If you live in negative self- and other-talk
ALL the time it takes its toll individually, as a family, and in
all your relationships.
We choose to see both Kevin and Brian as
they are...as individuals trying to grow with each day, making
mistakes along the way (as we ALL do) and trying to have some fun
in the process. It doesn't negate that we are serious about his
disorder but it sure does lighten things a bit as far as stress
is concerned. That didn't come overnight though. Those of you that
are just beginning this journey, let me tell you that I DO understand
where you are at!
It IS a reality in our family that we
have already experienced one death due to UNDIAGNOSED MCAD and that
there will be illnesses along the way for both our boys,
but that doesn't mean I have to think of Kevin as ILL all the
time just because he happens to have a metabolic disease. In
fact, in order to defuse the 'medicinal' atmosphere of having to
take the Carnitor®, we use the word 'vitamin' instead of medicine.
To me, taking medicine is usually in the context of being ILL and
Kevin is NOT ILL. So in order to promote a more uplifting atmosphere
we use a word that signifies NURTURING HEALTH instead of trying
to fend off ILLNESS.
After all my rambling, you probably get the idea
that words impact perceptions and vice versa. Take, for example,
how one views the percentages given each child for having an FOD.
There IS a 25% chance of having it but there is a 75% chance of
NOT having it. Which do you CHOOSE to focus on? Of course, when
a couple is trying to decide whether to have more children, it all
depends on your very own individual circumstances. You may already
have a child that is experiencing several difficult effects of serious
episodes and requires a lot of care and energy on a daily basis,
so you may make the personal decision not to have more children.
Yet, even in that circumstance, you still have a CHOICE of HOW
you are going to perceive those circumstances ~ as a challenge or
as a burden ~ it makes a difference! Your perception will definitely
influence your actions toward your child and the rest of the family.
If we as parents spend so much time in what we have 'lost' (i.e.
the so-called perfect healthy child) we miss out on what we DO have
~ children that REALLY need us and love us and bring joy to us no
matter what challenges are ahead!
If you recall the book reviewed in our January 1998
newsletter, Special Children, Challenged Parents,
Dr Naseef stated that point in a similar way ~ acknowledge that
your child has medical concerns but try and meet him/her where he/she
is at and move forward from there.
Try to be aware of your own use of language when
talking with others or even within your own self. It carries
over to all aspects of your everyday living. By changing your words
your overall perspective can be transformed from feeling victimized,
burdened, and destined for years of pain and sorrow to a life where
you learn to control what you CAN control, you view adversities/obstacles
as challenges, and you make a commitment to always advocate for
your child/children. And in so doing, you not only make a difference
in your own life, but in the lives of your children, family, friends
and others that come into your life! All by envisioning new ways
of using words positively and actively.
I would give anything NOT to have to deal
with Kristen's death and Kevin's disorder and I wish there was no
such thing as an FOD ~ but the REALITY is, in MY eyes, I have CHOSEN
to deal with them, as much as I don't want to ~ I NEED to!
What it comes down to is this...You can choose to
be DEFEATED by having to deal with these disorders or you can CHOOSE
to be an ACTIVE ADVOCATE for yourself, your children, and children
yet to be born! I have great FAITH and HOPE that the LOVE you
have for your children, both living and deceased, will show
you the way and give you the strength to NEVER GIVE UP!
Deb Lee Gould, Director, FOD Family Support Group
July 21, 1999
Kristen's 14th 'anniversary'
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