I am Jillian Whitten

a family member of someone living with ALS


How can a semi-truck come to assail my child and I can't move to save her?

A story I don’t want to write.
A life I don’t want to live.
A diagnosis I don’t want to be true.
A child I beg not to die.
Tick tock. Tick tock.

Your daughter, a daughter, MY DAUGHTER.
Her voice sounds different lately (is she getting a cold?) her hands have been trembling as she brings a cup to her sweet lips, that daily speak “I love you mom and dad.” (I wonder if she’s nervous about something.) She collapses at school and lands on her face (let’s go to the hospital). Tick tock.

ICU, MRI, EMG, lumbar puncture, 37 blood draws, blood clot on the brain, inflammation of the spine, stroke, grand mal seizure, NG tube, Genetic testing… Genetic testing… Genetic testing….WHAT IS HAPPENING?!!!!

“Your daughter Jillian has ALS.” We are so sorry, there is nothing we can do, it is always terminal, there is no treatment, there is no cure, Juvenile ALS is more aggressive than adult, maybe a year or two, enjoy the time you have left. Tick tock.

Fall to your knees, scream, beg, denial, rage, despair… There has to be something we can do, can’t there be something we can do?! What can we do?!!! Can’t there be anything we can do? Please, please, please do something, anything to save her! She’s our little girl. HOW IS THIS HAPPENING?!!!

This is OUR silly Jilly, always full of joy and smiles, never in a bad mood… Death cannot have her!!! She is ours!!! Death cannot come yet! She hasn’t lived a life yet!!! This is our little girl, she cannot die before us; we cannot bury our child! No death no, take me instead, you can’t have her. She’s ours.
Your daughter. A daughter. MY DAUGHTER.

PLEASE don’t take my child! How can a semi-truck come to assail my child and I can’t move to save her? How can I be forced to watch my child diminish away?! What will we do without her? How can we live without her?! How is there nothing we can do?! How does one go on taking care of their other children and giving them birthdays and going to baseball games and I’m supposed to SMILE again?!!! Does this gruesome cruelty never relent?
But she’s just our little girl. Tick tock. Tick tock.

I want to keep hearing your laughter and seeing your smile, please don’t go, my child. We need more time with you, please don’t leave us here without you, please stay, we love you, we need you here, please stay my sweet girl, give us more time with you, please. Give us more you. Please don’t take our daughter. Please put our hearts back together. Please don’t go. Please don’t go. Please stay…
Your daughter, a daughter, MY DAUGHTER.

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