with Lisa Copen
I am so excited today to share with you about two books that are written by a mom who has both the professional credentials as well as the education of experience, Jolene Philo. Jolene joined us here at Rest Ministries in 2009 for National Invisible Chronic Illness Awareness Week to discuss the topic that many parents, including those with chronic illness, face on a daily basis– “When Your Child is Chronically Ill”. (This podcast is still available and an encouragement to many, so stop by and listen.)
Jolene, thank you again for joining us here at Rest Ministries! Most people are not familiar with your story. Can you tell us a little about your own family?
[Jolene:] When our beautiful newborn boy was transferred to a regional hospital, my husband and I felt lost at sea. A few hours later, we learned that our baby required immediate surgery at a university hospital 750 miles away. Without it, he would die.
That news threw us overboard. We longed for someone who could come alongside and pull us out of the water. A book to chart a map through unfamiliar waters and assure us of God’s presence.
I cannot imagine what you must have gone through. Where did you turn for encouragement?
Well, our son was born in 1982, when pediatric medicine was a relatively new field. Families like ours were hard to find. Parenting books hadn’t been written. The internet didn’t exist. Over the next twenty years, even after the surgeries and medical procedures that corrected our son’s condition were over, my search for parenting resources yielded scant results.
Eventually, I sensed God nudging me to come alongside young parents lost at sea like we had been, to create a map they could follow.
I understand that your dad had multiple sclerosis and that he was in a wheelchair by the time you were four years old. So you certainly understand the additional stresses on a family who copes with a chronic illness
My dad was diagnosed in 1958 when he was 29. I was two, my sister was five, and my brother wasn’t on the scene yet. Within two years, Dad couldn’t walk, read, write, or control his bladder. My parents decided they would do everything possible to keep Dad at home while we were growing up. They did, but the stress on Mom especially was incredible. She was teaching full time, going to school to complete her four year degree and then her masters, raising three kids, and caring for Dad. Mom did so many things right for our family, but the one thing she did that was very wrong was not seeking help outside the family.
We were expected to pitch in and help with Dad’s care. That was fine, but outside support and services would have made a huge difference. The lesson was well-learned. Once Allen was born, I sought support–spiritual, emotional, practical–and didn’t wait for people to realize we needed them. Some stories about growing up with Dad are included in my new book, Different Dream Parenting, too.
So tell us about your books. I know they are similar and yet also have distinct differences too. First, tell me about your newest book that just came out in November, Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs
Yes. Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is that map that I had wished I had had. It’s a map for parents of kids living with medical special needs as well as conditions like Down Syndrome, juvenile diabetes, developmental delays, and autism, and those facing a terminal diagnosis. It guides parents by providing tools and resources they need to become effective advocates for their kids.
The book features interviews, advice, and resources from more than fifty families and two dozen professionals. With their help, the book addresses the situations parents face every day. Things I wish someone had told me.
What are some of these things you wish you had known how to do that you address in your book?
• Asking questions after diagnosis
• Dealing with insurance companies
• Preparing a child for a hospital stay
• Accessing financial resources and government monies
• Accessing special education services
• Determining optimum level of care
• Mobilizing volunteers at home
• Supporting the sibs
• Preparing a child for death
• Planning a funeral
• Participating in community and church events
• Creating a special needs trust for adult children with special needs
Wow! That is quite the list. I am thinking that some of these things we, who live with chronic illness ourselves, may be familiar with for ourselves, but navigating that medical maze for our child is a whole new world, plus we may have a different kind of emotional response to it. There are a lot of spiritual emotions to it all too!
You are right. In addition to practical advice, Different Dream Parenting tackles spiritual questions families are often afraid to ask. Questions about:
• God’s sovereignty
• Parental guilt
• Setting and maintaining spiritual priorities
• Grieving for children living with special needs
• Grieving the death of a child
• Passing faith on to children with special needs
And one of the things I loved in this book is the 30-day prayer guides that are in the appendices. They are perfect for parents who are just feeling to overwhelmed and exhausted to even form their own prayers.
Our local pastor is a strong proponent of prayer. Several years ago, when our kids were in elementary and high school, he gave me a thirty day prayer guide, ways to pray Scripture for a child’s character. I have used it for years. When writing Different Dream Parenting, I realized how beneficial a similar prayer guide would be for parents. As you said, they are sometimes too exhausted to put words to the longings of their hearts. These guides are an attempt to give them the words and the scripture references so they can voice their prayers in a variety of situations. Six of the guides are related to the topics of the six sections of the book and the seventh, as was mentioned earlier, are ways to pray for a child’s character.
Your other book, A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children also fills a real need. I remember when I first received a copy of it, I was so thrilled to finally have such a resource to be able to confidently refer people to.
I think it is so important that books like this exist, not just for the informational value, but so that parents feel they are not alone. One woman on Amazon shared quite a touching review about how the book brought about “healing tears.”
Yes, she gave the book as a gift and then wrote. . .
“I read most all of yesterday morning,” she wrote, “and I cried and cried and cried. I need to re-read the material to absorb it better. You see, much of what I read actually helped to give a name to feelings I had experienced but had not consciously been able to process in all the whirlwind of this last spring and summer.”
What would you like moms and dads who have children who are dealing with medical issues to be able to get out of your books?
I remember what it’s like to be lost at sea, thrown overboard by an unexpected diagnosis, and drowning under a flood of caregiving demands.
My goal is to put Different Dream Parenting into the hands of floundering parents so they have a map and know they’re not alone.
Thank you so very much, Jolene, for putting your heart and soul into these books. I know it is a very personal matter to you which you have truly been called to. Can you tell us a little bit about what our readers can find at your web site in addition to being able to order the books directly from you?
I have a variety of articles, guest bloggers and more at www.DifferentDream.com. There are some practical articles such as What to Do When Kids Say No, to dealing with haircuts with sensitive kids as well as spiritual support
Thanks again for joining us today, Jolene.
Jolene as donated books for YOU! We have 1 copy of A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children and 2 copies of Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs! THANK YOU, to Jolene and her publisher, Discovery House Publishers. Would you like to WIN A COPY? Just comment below, telling us in a few sentences about the time you were dealing with a difficult situation with your special needs child and you thought “HELP!” We will choose a winner in two weeks and notify you by email if you have won. You have one week to reply with your postal address and if we don’t hear from you we will choose another winner.