Raising a Child with Special Needs is Like Writing a Book
“Raising a child with special needs is like writing a book,” I thought after emailing my completed manuscript to my editor recently. “During my pregnancy I had a vague outline of what parenthood would be like. And I prepared a plot outline before writing this story. But in the beginning, the details of the birth and the book were foggy and surprising.”
The first surprise regarding our son came twelve hours after his birth. He was diagnosed with a tracheoesophageal fistula, also known as EA/TEF, and flown to a hospital far, far away for corrective surgery.
Boom! My husband and I became supporting characters in our son’s adventure story. It was full of unexpected setbacks, victories, sorrow, and joy.
We went places we never imagined.
We made decisions we felt unprepared to make.
We met people who helped us along the way.
We discovered we were stronger than we knew.
We found the source of that strength in God’s faithful presence throughout the story.
Our son is forty now. At my aunt’s funeral a few months ago, he put his arm around me while I cried. He gives my husband and me advice. His story is ongoing. As we age, he will play a role in our stories, too.
Every day I see that raising a child with special needs is like writing a book.
Forty years after our son’s story began and a few days after sending that manuscript to the editor, I am once again in a situation similar to my son’s early days.
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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.
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Guest blogger Jennifer Forman comes alongside new EA/TEF moms with her own story of setbacks and blessings.