"Raising a child with special needs is like writing a book," I thought after recently emailing a completed manuscript to my editor. "During my pregnancy, I had a vague outline of what to expect of parenthood. With writing, I had prepared a plot outline before writing this story. But in the beginning, the details of his 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 became a supporting character 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 advises my husband and me. His story is ongoing. As we grow older, 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, my life parallels my son's early days. The manuscript is out of my hands. Just like our son's care during his surgery and NICU stay. I have plenty to prepare for and catch up on before the editor sends revisions, but I don't know where to start. I'm a little uneasy. Uncertain about the present, as well as the future. Still, I am confident because of three unequivocal truths in our son's story.
1. Whatever twists and turns lie ahead, there's a way through.
We were young and unprepared during our son's early days. Information, resources, and experts were hard to locate. Today all those things are at my fingertips, thanks to the internet. Our son faced a life-and-death situation after birth. My present circumstance has much lower stakes. We made a way through then, and we'll make a way now.
2. The end of the story will be good.
Our son's story, though it hasn't ended yet, has been good in many ways. It strengthened our marriage. It influenced our career paths and his. It has enriched our relationship with people who became part of the story, people we wouldn't have met had he not been born with EA/TEF. It matured our faith.
Early on, our son's story was filled with hard bits. Even so, so much good came from it and continues to produce good fruit, including my present situation.
I don't know where this story will go or how it will end, but I know it will be good.
3. This goodness comes from God.
The good our family has experienced is beyond anything we could have imagined, predicted, or plotted. It has too many characters and is too intricate to be the work of one person. It's too consistent for the effort of many. However, the good we've seen is entirely within the realm of an intricate, consistent God. The good I've seen bears the stamp of the God who knows the end from the beginning (Isaiah 46:10), and specializes in bringing good from the hard bits of life. Based on who God is, I trust him to bring good from my uneasy, uncertain present.
Those of you who are living through a hard chapter have every right to be skeptical of my assertion. I was skeptical during our worst chapter. I wanted to walk away from a God who could author such a story for our son. Still, God remained faithful despite my doubts. He was present, working for good where I saw none. Until one day, I glimpsed the good and found hope again.
The hard chapter you are living is not the end of the story. Much remains to be seen. Much good has yet to be accomplished by the God who will hold you close when you can't hold on. May God, the author of all that is good hold and sustain you until hope returns.
He is writing your story, and it is good.
Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. 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.
