letting weakness shine

October 19, 2016, Michaela Evanow, 0 Comments

I never wanted to be strong.

But from the age of 16, when my spine was fused together with titanium, and my typical teenage problems disappeared into the bleeping of ICU monitors, I was told to be strong. I had to get out of bed the next day and learn the shape of my new spine.

Physically, my spine twisted for no apparent reason. There was no underlying condition. I was just a dancer and a dreamer, struck by this lightning.

Thankfully, scoliosis didn’t take away my dreams, but when my daughter’s terminal diagnosis 12 years later brought me right back to the same ICU, face to face with the same surgeon in the same hospital, I felt it was too much to bear. This doctor fixed me 13 years ago, but he could not fix my child. This was just a formality.

I longed to protect her. She was too weak for any surgery. Her bones simply broke from lack of usage. She lived three bright, beautiful years and then she was gone.

Stay strong, mama.

I rejected that phrase like I rejected her diagnosis of Spinal Muscular Atrophy.

No one could tell me my daughter, my sweet, gushy, 4 month old, longed for daughter was dying from a disease that was literally eating her strength. Run the tests again, I asked, because this is impossible. I believed if my strength was big enough, the outcome would change. And then I went to bed and vomited. I was sick for days. Heartsick and broken.

Stay strong, mama.

I rejected that phrase when at 13 months, my daughter was intubated and we were told to leave the room. I went into complete, animal shock, dizzy from anxiety and trauma. I begged them to let me stay in the room. I’ve seen a lot, I told them, I’m not afraid, please, please, let me be there.

And like officers of the law, they gently escorted me from the room and told me I might faint. They told us to wait in the empty ICU family room with bone dry Tetley teabags and saltines. Food for the weak. Food for the sick at heart.

Stay strong, mama.

I rejected that phrase when I went for a massage, for some self care, and received a call from my daughter’s home nurse and from my husband. Something was wrong with Florence, would I please come home?


I’m sharing over at the Village Magazine today. See the rest of the post here.

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