20/20 hindsight about our child with special needs was a long time coming. When our son was born in 1982, the doctor said he had a tracheoesophageal fistula TEF, now known as esophageal atresia (EA) or EA/TEF.
We were young.
We were first time parents.
We were expecting a healthy baby.
We were blinded by fear after our newborn's life-threatening diagnosis.
In those early days, we couldn't imagine having 20/20 hindsight about our child with special needs. Ten years later, we had an inkling that hindsight might develop. Twenty years after that, we sensed it was developing. Even so, we were surprised that it took until 2020 for our 20/20 hindsight to come into sharp focus.
It was worth the wait.
Nearly 38 years after the birth of our beautiful baby boy, hindsight reveals how his special needs diagnosis transformed us from a young, scared, and unsure couple into braver, confident parents. Here are five of the many means God used to complete the transition.
Photo credit: Sharon McCutcheon on unsplash.com.
#1: Bad Things
The day our child was born, we discovered that bad things do happen. In the years to follow, we discovered that we and our child could survive and thrive despite
multiple surgeries, procedures, and tests for our son,
years of sleep deprivation for us,
mental health issues for all,
and huge medical bills.
Despite all that and more, we are still here. And we are thriving.
#2: Surgeons
In the years after our son's birth, we learned that surgeons are a blessing from God, and surgeons who saw our son as a person and not a condition were a double blessing. Every surgeon who operated on our son saved his life and improved his health. But those who saw the baby, the boy, or the teenager in addition to his diagnosis made compassionate decisions that eased his—and his parents’—emotional and physical pain. My husband and I will continue to give thanks for them as long as we live, not only for saving our son, but for teaching us how to advocate for doctors and surgeons in the future.
#3: Friendships
In the weeks and years since our son's birth, surgery, and NICU stay, we have experienced the beauty of friendship in practical and spiritual ways. Wherever we have lived, friends have rallied around us and kept us going when caring for our son became overwhelming.We would have drowned without them. We have seen God surround us with the friends He knew we would need, though we did not know we would need them. We know He will surround us with friends in the future, too.
#4: Family and Faith
In the decades since our son's birth, we have come to appreciate the constancy of family and faith. They are the people—related by biology, faith, place, shared history, or circumstance—who stick like glue. They are the people we can call in the middle of the night knowing
they will listen to us,
pray for us,
travel to meet us,
or offer to house us.
They are the people who mirror the Christ we serve, the One who said, "I will never leave you or forsake you” (Hebrews 13:5). We have learned to trust the God who has populated our lives with such people.
#5: Good Memories
20/20 hindsight about our child with special needs revealed a sobering reality, as it brought us into the EA/TEF community. Our son is now a healthy, independent adult. But many children with the same condition and their parents won't have our happy ending. My heart aches for young families living with difficult outcomes. All I can say to you, my fellow EA/TEF parents, is this:
Hold fast.
Seek out good doctors.
Call your friends.
Wrestle with your faith.
Hold your babies.
Make good memories even in bad times.
Because one day when you have lived enough for your 20/20 hindsight to come into sharp focus, you will see that bad things, compassionate doctors, sticky friendships, and the family and God who will never leave you or forsake you have transformed you into the brave and confident parents your EA/TEF child needs.
Jolene Philo is the author of the Different Dream series for parents of kids with special needs. 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 at Amazon.
