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One Day in
the Storm of Life
Sally Nantais, October 2, 2005, The News-Herald
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https://www.bridges4kids.org.
I seldom focus
on the negative but when life happens it’s not always positive.
It was August 30, the first day of school for the girls, a time
of celebration. We started preparing for this day two weeks
ahead of time. I thought the morning would be smooth as silk but
then the FX (Fragile
X) fairy visited during the night.
Austin awoke and greeted me with a mess. All the extra attention
I wanted to give to the girls had to be directed towards Austin
and the clean up.
Mom had to keep all of her emotions in check and put on a happy
face, after all, that’s what mothers do.
I made it through the drive and our special pictures were taken
with big smiles all around. I almost made it out of the school
before my tears started but Peggy, a staff member, stopped to
thank me for something and the dam broke. At least the girls
didn’t see it, because the last thing I wanted to do was to ruin
their special day. The hugs I received from Peggy helped turn my
day around.
Grief never truly ends and the heartache is always there, just
beneath the surface. I only wish I had a choice as to when and
where it’s going to take over my life.
I recognized that it was time to start self-therapy and began by
looking for a little humor to lighten my load. That was easy,
considering how bad the day started out it couldn’t get much
worse.
Austin's room was cleaned and the girls had a terrific first day
at school. Thanks to Dad, we ended the day with a back to school
celebration dinner at a local restaurant the kids enjoy.
It's strange how the important things in our lives are always
highlighted.
Throughout the day, I witnessed on TV the havoc and devastation
left behind by hurricane Katrina. I worried about the families
that didn't have the means to evacuate, especially those who
might have had children or loved ones with special needs.
In retrospect, my morning might have felt like a hurricane went
through but I was grateful that I still had a roof over my head,
running water, electricity and those basic needs we often take
for granted.
Before, during and after hurricane Katrina, I watched Jim
Cantore, from the Weather Channel, reporting from within the
storm’s fury. I’ve always admired Jim because he is a father of
two children with FX. He is a constant reminder that for many of
us, FX is our biggest hurricane. In the end, I hope both Jim and
I will ride the FX storm out together, at least in spirit, right
to the cure.
The FX hurricane is growing.
It was previously estimated that one in 250 to 259 women are
carriers of fragile X syndrome. In July 2005, the American
Academy of Family Physicians reported that one in 200, maybe as
high as one in 100, women are carriers.
Yet, many doctors are still advising parents that it’s not
necessary to test for FX.
Those same doctors have no idea how Fragile X-associated
Tremor/Ataxia Syndrome (FXTAS) and Premature Ovarian Failure (POF)
are affecting the parents, grandparents, aunts and uncles of the
children.
Those doctors are rendering special intervention programs
inoperable. To me, this would be like not calling in FEMA after
a hurricane or placing an individual in a FEMA leadership
position who has no crisis management experience.
Why? Why would anyone listen to someone who knows so little on
the subject?
With compassion, I recognize that we all have our own storms to
endure. I’m hoping you’re doing whatever you can to make a
difference and get through.
If you can afford to give, and you haven’t done so, please think
about giving to the numerous reputable organizations supporting
the victims of Katrina. Somewhere out there, there is a little
boy or girl, just like yours or mine, with nothing to go home
to.
With admiration, I applaud the residents (many from the
Downriver area) and owners of Vining’s Trailer Park, Munith,
Michigan, who participated in an end of the season block party
raising $6,000 for the victims of Katrina. Together we made a
difference.
If you want to learn more about my hurricane, go to
www.FRAXA.org, the FRAXA
Research Foundation or FragileX.org, the National Fragile X
Foundation. And in case you didn’t know, October 5 is National
Fragile X Research Day.
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