It was 11 a.m. on a Saturday morning and our son, Carson, was starting to wake up. As a 15-year-old teenage boy, he slept late every now and then, but that Saturday morning was different.

Carson had been dealing with a severe eye abrasion, like a paper cut, from three days earlier. It was still so painful he had to keep his eyes closed. Entering his room, we hoped he would wake feeling better and able to open his eyes.

“How’s your eye feeling, buddy?” we asked. “Still the same, still hurts, can’t open it,” he responded with great frustration.

This was the start of day four of Carson “being in the dark.” Our hearts sank as we sat on his bed trying our best to console him.

Eye abrasions are just one of many physical issues that come with a condition called Epidermolysis bullosa, also known as EB. Both Carson and his younger brother, Kolbe, were born with it.

EB is characterized by extremely fragile skin and recurrent blister formations. Because the skin essentially doesn’t know how to remain attached when friction occurs, it affects all areas of the body, including internally. It has required numerous surgeries and hospital stays over the years for our boys. To be very candid, EB is a debilitating disease: Carson and Kolbe have never lived a day without feeling some type of pain.

As parents, the most difficult part of living with EB is seeing our boys suffer and realizing there is nothing we can do to take away their pain. Saturday morning was one more reminder of this reality, but it’s a cross we’ve carried for nearly 16 years.

“You have to give EB to the Lord; prayer and the Sacraments are the only way you’re going to get through this.”

Early on in Carson’s life, our pastor offered us this advice. We grew up Catholic, experienced different forms of prayer and received the Sacraments throughout our childhood and young-adult years. We didn’t, however, fully grasp how much we needed God’s grace until Carson was born.

Receiving the Sacraments of Reconciliation and Holy Communion as frequently as possible, praying together as a married couple and family, and keeping an open heart to trust in God’s healing power was the only answer to our suffering.

EB required us to quickly learn how to pivot between parenting and love with a gentle heart, physically and spiritually. Carson was the gift who intensely led us to a deeper relationship with Christ and His Church, showing us the way to truly believe and live the prayer, “Jesus, I trust in you.”

REDEMPTIVE SUFFERING:

Offering Up Our Days as a Prayer for Others

We often listen to the Holy Family School of Faith Rosary podcast in which Dr. Mike Scherschligt sometimes talks about suffering. His insight is one we strive to live every day:

What you did not choose, do not like, and cannot change… accept with trust and offer with love for the needs of others.

Offering up our days for others, especially the hard days, is a powerful form of prayer. When we do this, we prayerfully unite our suffering to Christ on the Cross and simply do the best we can–with whatever God permits to come our way each day. In those times of great suffering, like those “eye abrasion days,” we are closest to Christ.

Sixteen years into this journey God placed us on, we are still seeking, listening, trusting and striving to witness and persevere in our suffering, all the while giving thanks and glory to God for all He continues to do in our lives.

“Therefore, let those who suffer according to God’s will entrust their souls to a faithful Creator while doing good.” 1 Peter 4:19.

This article appeared in the April 2023 edition of The Catholic Telegraph Magazine. For your complimentary subscription, click here.