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This
is Damien's Story
As Damien's mom and primary
caregiver I could tell you all the trials and
challenges we have faced in dealing with his
initial diagnosis of nephrotic syndrome at the
age of two, his non-responsiveness to treatment
and his progression to FSGS, but I thought perhaps
it would help people understand better if Damien
told his own story, in his own words…
Hi. I'm Damien. I'm 5. My
birthday is in July. My kidneys are sick, sometimes
it makes me angry. Most of the time I'm just
fine, fine, fine. Everybody's always asking me
how I feel. Fine, fine, fine. I wish they would
just stop worrying and play with me.
I have to get pokes a lot.
The little pokes are okay, but not the big pokes.
I hate the big pokes. I hate them more than monarch
butterflies. They taste really bad, their colors
tell other butterflies that they taste bad. Yuck!
My mom helps me stay healthy. She protects me
from bugs. It's important to wash your hands
a lot because germs are bugs. Wash, wash, wash.
Sometimes I don't know what
to eat, only my mom knows, and grandma. I can't
have too much so-di-um or my kidneys will get
sicker. Sometimes I get a day off. I like days
off. I can eat a ham sandwich, but just two pieces
of ham. Little ones. I love ham more than the
whole universe. Ham is protein. I have to watch
protein and sassium (potassium). Sometimes I
get bananas and mom says I'm a monkey. But I'm
not, I'm just a regular boy. A big boy.
I go to the hospital a lot.
I have to try to eat good and take my pills.
I like my pills, but not the one that tastes
yucky. My blood pressure one tastes yucky. It's
white. Mommy's happy when I take it. She's proud
of me. Sometimes it's hard to take all my pills,
but mom helps me remember. Prograf, and prednisone
and lalapril (enalapril) and lalapril that's
the yucky one. Every morning, every night. It
makes me tired. I get tired a lot. So I just
sleep, sleep, sleep.
At thanksgiving we broke a
wishbone. My wish is to stay up all night and
all day and play, play, play and eat whatever
I want all the time. Even macaroni and cheese.
Mom says you have to help wishes come true and
anything's possible. I think you can make wishes
happen if you play. I like to play with clay,
and my brother, Donovan, and my mommy, and grandma
and grandpa and Matthew and daddy. Wishes will
always come true if you believe. I wish people
with sick kidneys would all get better and not
have to get the big pokes, and not to have the
little pokes either. Not any pokes. And I wish
that my kidneys could always have angels around
it to protect it. I wish everybody could be happy
and healthy all the time.
Damien's mom writes: Damien
and I talk a lot about how he feels, and mainly
he feels like any other little boy. He's said
since he was old enough to talk that he could
see angels. The Art Doll Angel Project and Damien's
hearts evolved from his wishes and his creativity
and love of playing clay with mommy, as one small
way our family could help fight FSGS and raise
awareness. Yes, it's hard on our family and each
day brings a new trial or struggle for Damien,
myself or his brother, but you take the ebb and
flow as it comes and I hope that I am always
able to see the beauty in struggle as Damien
does and to know deep in my heart, just as he
seems to, that “wishes will always come true
if you believe”. We wish you well…
You can contact Damien
through his mom at laurijean@spydermum.com
Lauri Jean kindly send us an update on Damien's condition. Please click here for more!
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