Counted Worthy: Blessings in Suffering of Special Needs Children

In Counted Worthy, A Father’s Perspective on the Theology of Suffering, Connor Bales shares life with his wife, Mary, and their five children, whom they have raised as a loving team. Each contributes in specific ways, according to ability. Older children help the younger. During outings, when a diaper change is needed, a choreography happens: Kathryn and Coleman hold up a blanket. Campbell gathers supplies, while their parents carry Libby and Hannah from car seats to the rear of the van. But this looks different than you might imagine.

I refer to mental ages. Kathryn and Coleman were seventeen and fifteen when Connor wrote the book. Daughter, Campbell, was eight. Libby and Hannah, then thirteen and eleven, are affected by Trisomy 16p, a rare and severe genetic disorder. Their brains are effectively nine-months old, thus they rely on family for feeding, diapering, and mobility. The others care for them not as babies but as the cherished young ladies they are, whose dignity and modesty deserve to be protected.

At Libby’s birth, only thirty cases of Trisomy 16p were known worldwide. Projected life expectancy was two years. A doctor described the condition as “incompatible with life.” Connor shares his and Mary’s heartbreak with Libby’s diagnosis. The loss of reasonable dreams and expectations parents have for their child: a vibrant, healthy future, happy childhood, marriage, and eventually a family of their own.

Doctors assured the Bales it was scientifically impossible to have a second child with Trisomy 16p, so they went forward with another pregnancy. But the unthinkable happened—another Trisomy 16p diagnosis with Hannah. More parental heartbreak and suffering.

Not to mention what the girls would endure. Frequent hospitalizations, intubations, painful procedures, fights to simply draw breath.

Parents long to carry their children’s heavy burdens and cannot. The desperation of that weight could have done them in, but for their faith.

Soon after Hannah arrived, both parents heard the same message from God: I have counted you worthy to get to do this twice. God had blessed the Bales with two precious girls. Gave them the privilege of shepherding, providing for, and loving two rare gifts. This changed everything. The Bales realized God would display his glory in their family.

Connor observes that God works within our suffering, and his goodness is not contingent upon healing. God is absolutely, completely, and lovingly at work in Libby’s and Hannah’s lives.

Siblings of special-needs children often become gifted at serving others. God used the girls’ disability to mold their siblings’ hearts with tenderness and compassion. They have a wider capacity for love. Kathryn is unapologetically “scrappy” in her advocacy of special needs individuals, not hesitating to rebuke those who disrespect them. Coleman never lets a door shut without looking for someone who may need help getting through it. Campbell is thankful that Libby and Hannah love to laugh and enjoys acting silly and making funny noises for their entertainment. She loves cuddling and watching Disney movies with them. Campbell says, “When God sees the girls, I think He thinks they are perfect.”

As Lead Pastor at Prestonwood Baptist Church North Campus, Connor has developed unique pastoral skills. He knows firsthand the anxiety of awaiting news in a hospital. He understands the disappointment and fear of an unfavorable test result. Connor is uniquely positioned to comfort others in those situations.

Libby’s and Hannah’s joyfulness has poured out to the Bales’ extended family as well. Aunts, uncles, and cousins have tight relationships with these precious girls, whom they love to hold, tease, and, in the case of their Uncle Neil, allow to play with his beard.

The ripples extend yet further. Connor’s church now has a robust and thriving special-needs ministry. Countless people have found help, support, and education or been blessed by serving the special-needs community.

My own sister, Liese, had a profound cognitive disability and a short life. Our family believed her suffering was no gift. Connor Bales taught me that, even while suffering, God has great and joyful purpose for every person.

I do not have the experience to expand on how joy in suffering blesses us and glorifies God. Instead, I refer you to Connor’s book and this beautiful song, Counted Worthy, at the very end of this post.

Click on this short video, Mary and Connor Bales Story to get a peek into what Libby and Hannah bring to the family party. Their ageless souls offer up radiant smiles, gleeful babbling, and adorable flapping of their arms. A love language cherished by their family. Glory to God.

Available on Amazon: https://www.amazon.com/dp/1954618247/?bestFormat=true&k=counted%20worthy%20connor%20bales&ref_=nb_sb_ss_w_scx-ent-pd-bk-d_de_k1_1_14&crid=IKNU3LR5ZMFU&sprefix=Counted%20Worthy