A L D

by Brenda   Jul 5, 2020


Three small letters...
adding up
to a word
I've yet to be able
to pronounce...
-
Three small letters...
signifying life or death
in a baby boy
who has just begun
to live...
-
Three small letters...
turning my daughter's
life
upside down
taking a moment
of pure joy
into moments of worry
into moments of guilt
was it her genes
that passed from her
to him?
Tears shed...
-
Three small letters...
a big unknown
looming ahead
no answers yet
he's too young
for MRI's
meanwhile
blood draws
meeting a host of new doctors
medical jargon
new lingo to learn
symptoms to watch for...
-
Three small letters...
signifying this rare genetic
condition
that destroys
the very things
that need protecting the most...
his nervous system
his adrenal glands
are already
being assaulted
how much damage
is occurring?
How much development
will be destroyed
before he's
even one?
No-one knows...
-
Three small letters...
I shed my tears
in private
I say my prayers
asking for comfort
for my daughter
and her husband
for what is coming
for what has already been...
I'm there
as a sounding board
a calm
in the midst
of this storm
they are heading into...
-
Three small letters...
with no cure
for this
I can only hope
and pray
that this sweet baby boys
slice of this
horrific disease
is but a sliver
ready to trade
my health
for his...
-
Three small letters...
how many other things
make up
three small letters?
I. O. U.
did my sins
my transgressions
pass on to
my own child?
To manifest
in this sweet baby boy?
Maybe it's karma's way
of saying;
"I'm here to collect"
you've done things,
you've said things,
you've acted unbecoming
more than a time or two...
Now you owe...
-
God, I hope not...

ALD is short for Adrenoleukodystrophy. It's a rare genetic condition that causes a buildup of very long fatty acids, or VLCFA's that cannot be broken down in the body. These fats build up and affect how the body normally functions. When they accumulate they destroy the protective myelin sheath around nerve cells, responsible for brain function. There are three main types ranging from symptoms that can be controlled by drugs to full bone marrow transplants to the adult version, none with a cure. There are only four states that test for this when a baby is first born. Thankfully Michigan is one of them. Otherwise we would never had known Liam had this and are in the process of taking whatever preventive measures to hopefully slow down the damage before it's permanent or fatal. Right now you would never know this little man is in the fight for his life. He's a beautiful 3 month old who has been poked and prodded more than most of us have in a lifetime. So please, say a prayer, light a candle, whisper to the earth spirits asking for peace and ease for his tiny little body...

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Latest Comments

  • 3 months ago

    by Rania Moallem

    this is reallyyyy touching ! <3

    • 3 months ago

      by Brenda

      thank you so much Rania, I'm hoping for the best and trying to adjust to what might be the worse.

  • 3 months ago

    by Liz

    This is so sad to read, Brenda. My thoughts are with you<3

    • 3 months ago

      by Brenda

      Thank you so much Liz, I appreciate your thoughts-

  • 3 months ago

    by Hellon

    I hope the little fellow pulls through. My thoughts are with you and your family right now.

    • 3 months ago

      by Brenda

      thank you so much for your kind words. I appreciate it greatly.

  • 3 months ago

    by Gracy Judith

    So sorry to hear this Brenda. My thoughts and prayers are with you all. It must be so difficult going through this, and poor little Liam...sending him healing hugs and prayers. The poem is beautifully penned. It was a poignant read. Was not aware of ALD...the footnote did help. Take care you all. Much love.

    • 3 months ago

      by Brenda

      Thank you so much, I appreciate your kind words and prayers.

  • 3 months ago

    by Brenda

    Walter and Daniel, thank you so much. We all greatly appreciate your thoughts and prayers. I too had never heard of this until now. I'm learning all I can so I can be prepared. He's such a sweet baby, he's starting to laugh now, it is such a beautiful sound.

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