Faith and Miracles in the Midst of Disability

by Linda Starnes

He performs wonders that cannot be fathomed, miracles that cannot be counted. ~ Job 5:9

There have been many times over our 25 years of parenting that my husband and I have looked at each other and thought the same thing: How do other families do this without each other and a reliance on faith?

Emily and Mac

Our journey started in Northern Virginia, the day of our daughter’s birth and concerns the pediatric hospitalist voiced regarding her measurements and low muscle tone. After almost two years of examinations and tests by various specialists, therapy services, early intervention, DAFO braces, glasses — all mixed together with much joy, love and happy moments — our Emily received the diagnosis of the rare genetic condition Sotos Syndrome, an overgrowth syndrome with accompanying physical anomalies, autistic-like behaviors, and usually some level of intellectual disability or learning differences.

Predictions were made as to her possible level of educational attainment, her physical limitations, and her ability to socially engage with others. This was the first of many times Emily defied the predictions of physicians and educators.

Some months after, her little brother, Mac, came along. We had one day’s notice prior to his birth that he was in great stress, and we were counseled he might not live through the birth process. But just like his big sister, this was the first of many times our son defied the odds and prognostications given about his circumstance. A short time after surviving birth and the transfer to the NICU, he was diagnosed with the extraordinarily rare condition of Congenital Bilateral Perisylvian Syndrome.

Resilience through Faith

Throughout all the medical swirl and educational support needs our two young children required, we relied on the strength of our marriage, love of our children, and our faith. We started seeing the miracles of small moments — the little steps of improvement, the attainment of a milestone, the first word, the joyous love of life our little ones displayed every day.

We worked hard and knew times of grief. We hurt for all our children had to face to ensure their health. All the while we prayed for strength and the ability to meet each day. And we were determined to hold onto our spiritual life and the comfort found in our faith community.

As members of a non-denominational mega-church, we felt it important to ensure our children, as well as other children with disabilities and special health issues within our congregation, attend church activities alongside their peers. We wanted them to learn about God, grow in their faith, and have the opportunity to serve others.

So, along with a few other families, we helped start ministry supports that later grew into a full Access Ministry to welcome and include those with disabilities and their families within the life of our church. This ministry has since become one of the largest of its kind in the country.

Some years later when our children were in elementary school, we moved to the suburbs of Orlando. The educational, medical, and social challenges continued, as did our reliance on each other, on our new faith community, and on God. Once again, we encouraged and worked with those in leadership at our new church to enact disability-related ministry supports similar to those of our previous place of worship.

Thriving

Time marched on, and our youngsters grew up! Now I’m the seasoned Mom of two 20-somethings. However, once a Mom, always a Mom in some ways. For example, our son, Mac, recently came home to undergo a fourth surgery in less than two years, just another to add to the over 30 other times spent at the hospital over the years with either Mac or Emily.

The journey has never been dull. Life has been filled with great fun, tough times, unexpected accomplishments, and blessed moments where we believe we have glimpsed the hand of God at work.

Our daughter still struggles at times with social interactions, fine motor issues here and there, and occasional times of anxiety with learning new material. But Emily defied the early predictions, and faces these struggles head on while pursuing a Master’s degree in Public Health and Disability Studies in another state.

Our son has lived his entire twenty-two years with a trach, feeding tube, contractured wrists, mild right hemiparesis, and the need to use assistive technology for expressive communication. However, Mac also moved far beyond the dire assumptions about the quality of life he would know. He, too, lives away from home on his own at his university’s dorms. He graduates this spring with a degree in Multimedia Communications with the goal of pursuing work in photography and videography.

Some may have looked at our life and thought it unfair, and wondered how we could have maintained faith in God. Others might question how God could have allowed our children to know disability and special health care needs. Still others probably doubted we have known miracles of God.

We believe differently. Our faith is stronger than ever because our children have come to know God and share about their faith with others in their midst. Our reliance on Him is stronger than ever because our children have a unique perspective of God’s hand in their lives through their disabilities. And we know we have been blessed with miracles large and small because both our children are still here with us on this side of heaven…and thriving!

Author: Linda Starnes • Date: 3/21/2018

About the Author

Linda Hampton Starnes has spent her life actively involved in the disability community — as a special educator, parent, volunteer, and advocate. After teaching, and then working at the U.S. Departments of Justice and Education, she became the mother of two children with varying abilities, Emily and Mac. Due to their significant health care needs, she managed 24-hour home nursing care, worked with physicians and therapists in fifteen medical specialties, and has overseen approximately 40 hospitalizations, surgeries, or procedures under anesthesia for her children. Now both are grown and successfully “launched” in their respective college and career lives.

Linda has served on many local, regional, and national boards of disability and healthcare organizations and educational institutions, and presents at conferences across the country. At times it is a family affair with one or both of her children co-presenting with her. Along with her husband of 33 years, Tom, the Starnes family have worshipped and helped serve together. They have encouraged their chosen places of worship towards welcoming and including those with disabilities into the life of their congregations, through supporting the development of Access Ministries in Northern Virginia and the Orlando, FL area.

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