Soft and warm in our hands, the days-old eyes look up at us. Squirming, gurgling… perfect. Until the first time they scream for an entire night. Or spit their rice cereal in your face.
Or end up in the NICU for months at a time.
Or wind up with a lifelong diagnosis that changes their life – and yours – forever.
Our family’s faced situations like that. Many of yours have too. Today’s special guest, friend and author Jolene Philo, is here to share the story behind her new book for families raising special needs kids: Different Dream Parenting. Welcome Jolene!
Q: Jolene, please tell us about you and your family.
My husband, Hiram, and I have been married for 34 years. We met in college at the Freshman Orientation Dance, and as they say, the rest is history. Our son, Allen, was born in 1982 and immediately made life interesting. Shortly after birth, he was diagnosed with an esophageal birth anomaly requiring immediate surgery at a hospital 750 miles away. It took 7 surgeries over 5 years and another at age 15 to correct the issue.
He had no other physical anomalies and no intellectual issues. But at age 26, he was diagnosed with and treated for post-traumatic stress disorder caused by all the early medical interventions. The treatment was successful. He is now married and doing well. Our daughter, Anne, was born in 1988. She was our “easy child” though she struggled with dyslexia throughout her school years. She is also married and graduated from college in May of 2011.
Q: What challenge(s) led you to write your book?
When our son was born, pediatric medicine was still fairly new. Kids ten years older than him were the first to survive surgeries and cancer treatments in large number. Very few resources existed for parents in those days, and I felt incredibly alone. 15 years later, when Allen had his final major surgery, I was surprised at how few resources still existed.
When I left teaching in 2003 readers responded positively to my articles about special needs parenting. That’s when came up with the idea for my first book, A Different Dream for My Child: Meditations for Parents of Critically and Chronically Ill Children. Someone who read it suggested the idea for a practical parenting guide for a broader spectrum of special needs situations.
Again, my preliminary research unearthed some good, comprehensive special needs parenting books in the general market, but none in the Christian market. That was deeply disturbing, as believers are charged to care for widows, orphans, and the oppressed. Never in my life did I feel more oppressed or alone than when first parenting our son. I felt called to write the book to fulfill God’s command.
Q: What do you feel is hardest for parents of special needs kids?
Hands down, the isolation. It is so hard to find someone who understands what it’s like to have a child with special needs in a typical world. Care giving, doctors’ appointments, and trying to keep up with daily life and work was so consuming, there was no time to search out other parents. In fact, our son was 27 before I spoke face to face with the mom of another child born with the same anomaly.
Another hard thing was to allow myself to grieve what was lost in our son’s childhood because of his special needs. I thought that was wrong because our child lived and eventually thrived.
So I felt guilty about my grief until doing the research for Different Dream Parenting. While interviewing parents for that book, they voiced similar emotions and experiences. I realized our grief was normal, necessary, and valid.
I recently received an email from a young mom who was a student of mine when she was a third and fourth grader. She’s the mother of twin boys born prematurely in the summer of 2010. I sent her a copy of A Different Dream for My Child several months later.
In her recent email, she ordered four sets of the books: a set for the NICU where her babies were, another for the hospital’s parent outreach program, another for her sons’ pediatrician, and the final set for herself. She needed both books because the book I’d sent had been passed on to a NICU nurse in Iowa City. Since the first book was published, several families have ordered books by the case, so they can include the book in gift bags they distribute at the hospitals where their kids were treated. Pretty amazing!
Q: Anything else you want to share?
I love to hear from readers and connect them to resources and other parents equipped to come alongside them. I encourage parents to visit A Different Dream where resources, product reviews, and guest bloggers including Laurie Wallin are featured daily. If you want a peek into life at my house, check out my personal blog, Down the Gravel Road.
Or connect with me on Facebook or on Twitter. Different Dream Parenting: A Practical Guide for Raising a Child with Special Needs can be purchased at bookstores, Amazon, Barnes and Noble, ChristianBook.com, and at Discovery House Publisher’s website. Those involved in non-profit organizations can contact the publisher for information about special discount rates.
Thanks for being with us today, Jolene. I’m so excited to see ways your book helps set free and give confidence to special needs families!