What I Didn't Know Before My Son With Spinal Muscular Atrophy Had Spinal Surgery
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.
AUTHOR BIO: Lori Butierries is a full-time caregiver to two children with disabilities. She uses her life experiences and the medical knowledge she gained from serving as a Hospital Corpsman in the United States Navy to help others facing similar hardships. Lori is an author for The Havok Journal, an official columnist for AwareNow Magazine, and a contributor to The Mighty. Likewise, other news sites like MSN and Yahoo! News have also republished select articles Lori has written. Lori's writing extends to children's literature. Her debut picture book, GIFT FROM GOD, was self-published at the beginning of 2021 and placed as a finalist in two categories in the 2021 Next Generation Indie Book Awards. Lori aims to use her writing to educate others about, advocate for, and dismantle negative stereotypes regarding disability, mental health, and the military/veterans community by talking about these topics with people of all ages.
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