A Different Dream
By Constance Fink
“Something’s wrong,” the obstetrician said, and with those words, Jolene Philo’s dreams evaporated. The life she dreamed of before her first baby’s birth – of breast feeding and exhausted joy – turned into a nightmare of emergency transportation and intensive care units.
She watched helplessly as the doctors whisked away her newborn son to airlift him for emergency trachea/esophagus surgery. The surgeries continued for 15 years.
Medical care for chronic illness has become familiar to Jolene, not only with her son, but also with her father. When Jolene was two years old, her father was diagnosed with multiple sclerosis, and wheelchair bound by the time she was three. Her first book, Lessons from My Father is about her childhood.
Jolene’s life took another unexpected twist when her son Allen, following all of his surgeries at age 20, converted to Orthodox faith and entered a monastery.
As an author and speaker, Jolene’s firsthand experiences have plated her message of hope with genuine empathy and compassion. The lifeline she extends to her audiences is: “No matter how difficult the road, you do not have to lose hope.” Jolene recently published her latest book A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children.
Jolene has been married for over 30 years to a “cute guy” named Hiram Philo. Jolene describes their second child, Anne, as having “all parts in working order”.
JBU: How did God prepare you for Allen’s medical challenges?
JOLENE: He prepared me by bringing me into a personal relationship with Christ at a young age, by placing me in a home with a disabled father, and by providing me with a husband who truly understood how to love me and our son unconditionally.
JBU: What were the factors in your son’s decision to leave evangelical Protestantism for an Orthodox monastery?
JOLENE: We didn’t know it at the time, but he was suffering from post-traumatic stress disorder (PTSD) induced from the medical trauma experienced as a child. He was looking for a structured environment as he felt increasingly out of control. The Orthodox Church appeared to offer what he was looking for. Later he found the external structure and control couldn’t heal his inner turmoil. After six years in the monastery, he left to find treatment. God led us to a facility where he went through a week of intensive outpatient therapy. Currently, he lives a few hours from us, has a good job, worships at an Orthodox Church, and in April of 2010 married the girl he left behind before entering the monastery.
JBU: How has Allen’s denominational switch caused you to grow?
JOLENE: God showed me that He is bigger than the denominational box I wanted to put Him in. God places believers within many denominations. Even though they express their faith differently, they are brothers and sisters and worthy of our respect. I am not to judge them or isolate myself from them, but to trust God to work through all of His children.
JBU: How did you help your daughter have a sense of normalcy when Allen required extra attention?
JOLENE: Our two children are 6 years apart. When we had to concentrate on him, either behaviorally or medically, we had a support system that would give her lots of attention. She was (and is) spiritually mature for her age, so we could talk easily to her about what was happening. Once Allen became a monk, we visited him once a year. We treated the trips as an adventure and found ways to cope with the different culture. Most of all, we maintained a sense of humor.
JBU: What have you gained that you may not have had if you had a “normal” life?
JOLENE: I learned life doesn’t have to be perfect to be good. We developed a great deal of compassion, empathy and strength. From my mom’s experience, I learned the importance for women to have job skills as mom supported our family after my 29-year old dad became disabled.
JBU: What is your ministry to families with special needs children?
- I speak at educational, medical, church and women’s events.
- I write magazine articles and am a columnist for Caregiving in America.
- My book, A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children, was released in 2009.
- I write daily blogs on two websites: www.DifferentDream.com and www.jolenephilo.com.
- I host an online parenting show called Life Dreams at www.webTV4Women.com
JBU: What do you see as the greatest need for parents of special needs children?
JOLENE: They need to know they are not alone. God will place people in their lives to help them.
JBU: How are churches helping these families and what can they do better?
JOLENE: Churches are beginning to integrate special needs kids into Sunday school and church programs and provide respite care so families can get away. The leaders need to promote these practices and provide training.
JBU: What are some of the top things you have learned?
JOLENE: I’ve learned to live life with the “lens cap” off, and not to set my son’s drum set in the room directly above my bedroom! Most importantly, God is good even when life isn’t.
- Favorite Scripture: Romans 8:32
- Favorite Book: Peace Like a River by Leif Enger
- Hobbies: reading, cooking, family reunions, scrapbooking
- E-mail: firstname.lastname@example.org
- Website: www.jolenephilo.com