Please meet my friend, Jolene Philo.Jolene and I met several years ago at a conference in Iowa. Since then, we’ve chatted on the phone, taught a class together and attended conferences together. (all the while wondering how much fun we would have had if we’d worked at the same school when we were both teaching full time…)Jolene is an incredible teacher, having taught kids of all ability levels in a public school. She also has worked in ministry, and is currently enjoying a new career as an author. You MUST read her books, A Different Dream for My Child and Different Dream Parenting. Jolene is married to her husband, Hiram, and has two adult children, Allen and Ann (and two children-in-law!)Today, Jolene reflects on her own experiences as a mom raising a child with a chronic illness, and offers encouragement and wisdom in the process…Katie Wetherbee: Tell me a little bit about your experiences as a mom to a child with a chronic illness.Jolene Philo: Our son was born in 1982 with a life-threatening birth defect that required immediate surgery on his esophagus so he could live. During the next five years he had seven surgeries and hundreds of procedures and tests to get his esophagus to function correctly. Another major surgery at age 15 completed the process.
During adolescence, he began to exhibit some impulsive and self-destructive behaviors. At age 18, he began a pattern of running from stressful situations that lasted 8 years. Finally, he realized he could not stop the behavior himself and asked us to help him seek mental health treatment. Within one week, he was diagnosed with post-traumatic stress disorder (PTSD) caused by early invasive medical procedures. After a week of outpatient treatment at a cutting- edge outpatient clinic in late 2008, his life was totally changed.He’s now married, has a excellent job. He and his wife are expecting their first child in September.KW: What did your church family do that was helpful to you as you raised Allen (and Ann!)JP: When Allen was constantly in and out of the hospital that first year, our pastor and his wife did a Bible study with us to answer our questions about why God would allow a little baby to suffer so much. I can’t remember much about the theological truths learned, though my husband says we studied the book of James. What I do remember is a family that gave up a night a week to meet with us and share our journey. We moved when Allen was 3, and our new church family was supportive a year later when he had another surgery. He was constantly on the prayer chain, people visited the hospital. One family familiar with chronic illness requiring surgeries brought a picnic. We put Allen in a wagon and went outside to the courtyard to eat with us. That moment of “normalcy” was precious.KW: What is it like to transition from being the mom of a child with an illness to having ADULT children? How did your experiences with disability shape that experience?
JP: Allowing children to leave the nest knowing they will sometimes fall is hard for parents, whether or not special needs are involved. The addition of special needs makes the experience more intense. Hiram was better than I at trusting God would watch over our son. I constantly worried about whether he had medicine, was sleeping with the head of his bed elevated, making impulsive decisions that could ruin his life.
KW: Any advice for churches as they reach out to parents of kids with disabilities?
I encourage them to use the verses in James 2:15-16 as a guide: If a brother or sister is poorly clothed and lacking in daily food, and one of you says to them, “Go in peace, be warmed and filled,” without giving them the things needed for the body, what good is that?
These parents are so needy. They’re often exhausted, discouraged, afraid, financially strapped because of expensive treatment for their children, racked by guilt because they can’t meet their kid’s needs, and isolated. Churches need to first give them the practical, supporting love of Christ. Parents are too tired to comprehend deep theological issues, as I was during that long ago Bible study, but they appreciate someone coming along to help bear the load. If churches follow that maxim, they can trust God to work in the hearts of family members. Eventually, the truth churches are living will chip away at unbelief and doubt and unbelievers will come to faith.
For more information about Jolene and her work, please have a look at her website!
Thank you, Katie, for allowing me to guest post. Reading it I realize our daughter Anne is woefully neglected. Her entrance into our life was not as dramatic as our son’s, but she has been a source of delight to us. Her struggles with dyslexia showed us that with strong parental support and excellent teachers, kids with similar issues can do very well in school. She’s been a joy to raise and is now an interesting, creative college graduate.
I agree, as a mom of kids with special needs Jolene’s books are a blessing! I wish I could have had her books when I first began this journey!