To TSC (Tuberous Sclerosis Complex):
We had never
heard of you when you randomly entered our lives,
You ruthlessly
descended on our first born son, changing the trajectory of his life.
How cruel
you can be, filling our lives with calamity.
Because of
you, our son endures severe autism and ADHD.
We are
constantly guessing when he’s in pain, he cannot speak.
We never
know what you will do next.
A new
surprise challenge lurking around every corner.
So many
life-threatening possibilities:
Brain
trauma, kidney bleeds and maybe failure.
Will his
heart stop beating? Or will he go into status epilepsy?
You are
unrelenting, unforgiving, you see?
Controlling every
single moment we breathe.
We are slaves
to all your twists and turns.
We are not
free: to travel, to play, to relax,
To make
quick trips to the grocery store.
We cannot
leave any door open,
Or any item
overlooked in our house.
Or, it will
end up ruined, destroyed, thrown about.
The
financial burden you inflict is enormous.
You wreak
havoc in every aspect of our lives.
You make us
play a constant guessing game.
We don’t
sleep. We are never at peace.
You demand
all our time and energy.
I fear
shutting the door when I lay my son down to sleep.
I panic,
“Will my son live through this night?”
You leave us
feeling crazy,
Fear driving
our days and nights.
I see TSC in
every ailment, big or small…
Every
out-of-the-ordinary move could be a sign of something big.
I’m
constantly questioning, “What is real and what is not?”
You control
our past, present and future;
Have taken
our free will. I despise you.
You inflict
so much pain: emotional, mental, physical.
We are
forced to bend to your command,
As you
demand all our time and energy.
You leave us
isolated. We feel so alone.
No sure
answers or solutions.
Even professionals
don’t know how to help.
You don’t
draw empathy,
And leave us
feeling like no one understands.
You are
unknown to most,
Yet unlike
cancer, you leave no possibility for a cure.
Unlike
diabetes and heart disease, there is no way to proactively manage you.
You have
created an impossible task,
As we try to
deal with what you throw at our son.
You have
tried to take my child from me.
In spite of
this, he shines.
Through all
the chaos, I can still admire his curly hair and his deep brown eyes.
His eyes: so
inquisitive. There is so much there.
You try to
block it, but I can see who he is.
You try to
break us:
Creating
harrowing situations that leave us in anguish.
You have
come close to success so many times, making us question who we are.
But in those
moments we fall to our knees.
Praying to
God to help us through each tragedy.
Our son
brings joy to all those whose paths he comes across.
Without you, who
would we be?
Would our
child’s accomplishments mean so much?
Would his
laughter and smile be as bright?
You’ve made
us realize: We are not here for him, he
is here for us.
