The SpecialMoms Parenting Magazine 1st Issue | Page 18

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Advocates Corner
Some prize, huh?
Fortunately,

Elia

•
is

Apply sunscreen through-

out the day (every day)–even

doing

when we’re inside.

great. She’s responding well
to the medication and her

•

doctors believe that she is

and monitor the UV Index on a

well on her way to remission.

daily and even hourly basis.

We’re

steadily

decreasing

•

her dosages and her infusions

Avoid the peak sun times

Wear hats and protective

clothing if we have to be out

have decreased from once

during high-risk times.

a week to once a month.
If all continues in a positive

• Do our best to avoid germs by

manner we’re hoping that her

washing our hands, sanitizing

treatment will be a total of two

surfaces,

years from diagnosis. In the

contact with those who may

grand scheme of things that’s

be contagious.

pretty fantastic. We know how lucky we would be
if that really was the outcome. Most JDM patients
are in treatment for a minimum of 4-6 years. And
sadly some will always be undergoing treatment.
The thought of eliminating the medications and
treatments, mood swings, changes in appetite,
and energy fluctuations is the light at the end
of a very long and winding tunnel. We’re hoping
she enters remission and all of these things will
become a distant memory for her, and that
because of her age, she’ll only “sorta” remember.

and

avoiding

• Learn to manage stress in a healthy way. Yes,
even at two years old. And yes, this is a work in
progress.
Believe me; we understand how wonderful
it would be for her to be in remission. And, trust
me when I say we won’t take it for granted, not
even for a second. But, we’ll admit we’re still sad
for her. When we think back to our childhood we
remember long days at the park, swimming, and
playing sports like softball, tennis and soccer. While
these things are not impossible they will have to be

Even though our best-case scenario will be a

much more calculated and will lack the innocent

much different life than we have right now we’ll

spontaneity that should accompany childhood

still be fighting the fight to keep her from having

memories. Even the well planned family vacations

a flare and returning to an active stage of the

will now be scheduled according to risk rather

disease. For her to remain in remission we’ll need

than typical school and work schedules.

to avoid her triggers which are thought to be sun
exposure, viruses, and stress. In theory, if we can
minimize the triggers we minimize her risk. Easy
enough, right? I mean, what are the chances of
her being exposed to the sun, germs, or stress?
So, even in remission, we will:
18  The SpecialMoms magazine ~ Winter 2014

There are so many things that we now have
to consider that never crossed our minds just
months ago. It’s amazing how life changes in the
blink of an eye. For instance, our next home will
be selected based on the available shade in
the yard, the placement of the windows in her