Parents of Chiari patients struggle everyday with mixed emotions, pain and heartache over watching their child in pain, and feeling helpless, often filled with guilt over whether they are making the right choices for their child. They often suffer from bouts of depression, fear, frustration,guilt and heartache.  They have the most important role in the battle against Chiari, being an advocate for their child, and sometimes are the last people to be asked how they are doing.  This poem; submitted by Shannon Schroeder (parent of Brooke); was a way to cope at a time, when so many questions had not been answered.


She had another MRI today,
cried as they put her to sleep, she didn't want to stay.
I tell her it will all end one day,
the big machines, headaches, and drs appointments
will soon go away.
In school she will one day get to stay.

She knows the name she knows the color,
she knows the disorder in a way like few others.
Chiari malformation in her innocent eyes, is pure evil.
She has no clue why I sit and cry, researching this thing
that has taken away my precious daughters smiling eyes.
I know it's a life sentence, I know I'm lying when I tell her
it'll be over soon so let's keep trying.
I pray at night one day she may forgive me,
as she will see I didn't want her to hate me.

Don't get me wrong I know we are lucky,
many have had worst cases than hers
and their families would trade places with me in a heartbeat
to see their prince or princess again.
To tell them how much they are missed
by their families and friends.

Surgery after surgery when does it all end.
How much pain can you sentence to your best little friend?
Pill after pill she cries as she takes.
She can't swallow them and hates their aftertaste.

She's really amazing I will tell you that now.
Her strength leaves many wondering how?
She doesn't get it from me nor her father.
It's the force that comes from the heart of this 4 ft. Wonder.
So I ask you today for her sake and mine,
promise me this one fight that won't fall to the way side.

~Shannon Schroeder~