I am Meredith Burns

a family member of someone living with ALS

New York

She smiles and her love is immensely present.

I am Meredith, a 40 YO mother of 3 young children, and my beautiful, extraordinary Mother. Ellen Steiner was diagnosed with ALS nearly two years ago. My mom, a former elementary school teacher and makeup artist for burned children, has already been afflicted with Frontal Temporal Lobe dementia for over 10 years.

My mother is a warrior and despite what we thought ALS would look like in her, she can still walk and communicate. She smiles and her love is immensely present. Because of my mother’s dementia, she’s not aware her body is failing and she doesn’t have much speech ability. In some ways, her lack of awareness and understanding is a blessing. My mother seems to live in a state of blissful ignorance.

I have been devastated by my mothers illness, she was my dearest friend and confidant and I started to lose her as her brain was taken over by dementia when I was 27 and she was 60. She has never met my children with her brain intact. My mother can’t fight for herself anymore, but I can.

More about us here: https://babe.hatchcollection.com/i-dont-know-how/

More stories

See all stories

Back to Top