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What I Didn't Know Before My Son With Spinal Muscular Atrophy Had Spinal Surgery

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I didn’t know that I wouldn’t be able to pick you up again.

I didn’t know that your body wouldn’t bend.

I didn’t know that my upper arm strength was so weak.

I didn’t know that spinal surgery would change everything, not just the shape of your frame.

I didn’t know it would be the last day I held you in my arms.

I didn’t know I wouldn’t dance with you again to silly songs.

I didn’t know it would stop you from sitting in my lap.

I didn’t expect everything to change in an instant.

If I had known, I would have held you for longer before placing you on the gurney for your procedure.

My only regret is that I miss the feel of your comforting weight, but I wouldn’t change the outcome either.

It is hard to stay sad when I look at you and see a smiling, relatively healthy, and happy kid, despite having spinal muscular atrophy, doing great.

My arms may be empty, but my heart is full and lightweight.

Originally published: August 24, 2022
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