Lymphatic Malformation Awareness Day
Lymphatic Malformation Awareness Day – May 15th, 2018
I wrote this poem a few years ago with the intention of never sharing it, but I would like to share it with all of you.
On September 1st, 1993 I came into this world in Everett, Washington. My parents knew that something was “wrong” with me while in utero but wasn’t given an official diagnosis until after I was born.
Lymphatic Malformation was the diagnosis the doctors gave my parents. But what exactly is a Lymphatic Malformation?
Lymphatic Malformations (LM) are rare non-malignant masses consisting of fluid-filled channels or spaces thought to be caused by the abnormal development of the Lymphatic System. LM can affect any part of the body (except the brain) but are most common in the head and neck regions. LM is considered a rare disease because it affects only 1 out of every 4,000 children born.
May 15th each year is Lymphatic Malformation Awareness day. By writing this article and sharing my poem, I hope to start a dialogue with people about educating themselves before judging someone based on their looks. Everyone has a story to tell just like a novel, but if you judge the novel by the cover, you never get to experience what’s inside.
Ask me what it’s like to have people stare as you walk by,
To hear people whisper as if I can’t hear them.
Ask me what it’s like to be judged because of your looks,
And if I believe in the saying “sticks and stones can break your bones but words never hurt me”.
Ask me how much effort it takes to say a simple sentence,
Or how impatient people are when talking to me.
Ask me how much time I’ve spent in the hospital,
Missing out on school and family time.
Ask me what it’s like to not have someone close by to relate to,
Because I have a rare disease known as Lymphatic Malformation.
Ask me what I would do to be able to meet someone like me,
Even if it’s just for a day.
Ask me if there is a cure,
I will tell you I really wish there was.
Ask me how many times I went home from school crying,
Because society and kids suck.
Ask me how many times I’ve thought about killing myself,
The answer? You don’t want to know.
Ask me what it is like to have a feeding tube in my stomach until high school,
When tight shirts and bikini’s were popular.
Ask me what it was like growing up with no friends,
I can tell you it’s lonely.
Ask me if I could have one wish what it would be,
To find a cure tomorrow.
Ask me why I’m still here when the odds weren’t in my favor,
Simple, I’m a fighter.
Ask me before you judge me.
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