A Different Dream for My Child, Part 2

Welcome back to day two of my visit with Jolene Philo, the author of A Different Dream For My Child: Meditations for Parents of Critically and Chronically Ill Children.

If you would like a free copy of Jolene's book, please leave a comment below. I'll draw the name of the winner on Tuesday, September 22.

Welcome back, Jolene! Yesterday we talked about the needs of the parents of chronically ill children. What about the rest of the family--siblings, grandparents, aunts, uncles, and cousins? How are they changed? What support do they need?
One of the moms I interviewed for A Different Dream made an interesting observation. She said their daughter Beth's struggle with cancer was hardest on the grandparents. The grandparents often felt like helpless onlookers, getting health updates secondhand, while the parents always knew what was happening and were involved in the treatment plan. I think that sense of helplessness afflicts all extended family members.

Siblings, grandparents, and other family members need to be reassured of how important their presence is to the parents. Encouraging extended family members to fill a more hands-on role--serving as head of a family prayer chain or official photographer, updating the Caring Bridge web site for example--will also make them feel more like they're doing something real.

One of the difficult realities of life is that not all children survive their illness. What if the unthinkable happens and a child dies? How can those parents work through their grief and recover?
Parents must avoid isolating themselves. They have to let people in, tell them how they feel, and keep sharing as they walk through the long journey of grief recovery. Certainly, if the parents are part of a church family, they should ask the pastor to help them find grief counseling. Compassionate Friends is a national organization for parents who have lost children. It has support groups all over the country. Hospice is another organization designed to help grieving families. The resources page at Different Dream provides links to a number of organizations and some excellent books.

It's hard to approach of parents of a seriously ill child. It's doubly difficult to know what to say to parents who have lost a child. How do we approach them? What should and shouldn't we say and do?
Never say, "I know how you feel," unless you have lost a child in similar circumstances. Instead ask how you can pray for the family and make specific offers of help, like those we discussed yesterday. (See Sept. 14 blog post for suggestions for specific ways you can help.)

Also, be sure to use the child's name when talking to grieving parents. Perhaps because we feel using a name will be too painful for the family, we shy away from using it. But every parent I spoke to said they loved to hear their child's name. They loved to hear others tell stories about their children. So, tell your stories if you have them, even if you cry while you do it.

Finally, periodically send notes or cards to the family for at least a year, especially on the child's birthday and on the anniversary of the death. Tell them how you are praying for them and share your memories of their child. Parents need to be encouraged and remembered for months and years after the funeral.

If you could choose one statement of comfort or encouragement that readers come away with after reading A Different Dream for My Child, what would it be?
I want parents to know that no matter how deep their suffering and loss is, they are not alone. They don't need to succumb to hopelessness because God understands exactlyhow they feel. His Son died on the cross, so He knows the pain of separation caused by the loss of a dearly beloved child. He is with them, and He cares about them, especially when they feel most abandoned. They can trust Him to lead them through this hard time, until they find purpose and meaning in the different dream God has for their child.

Jolene, thank you for stopping by for a visit. Jolene is giving away a free copy of A Different Dream for My Child. Please leave a comment below. The winner will be announced on Tuesday, September 22.

About the author:
Jolene Philo has been a teacher for 25 years and has published numerous articles on parenting a special needs child and preparing children for a hospital stay. She is a regular contributor to a regional monthly women's magazine, has spoken to MOPS groups, and is a commentator for Iowa Public Radio's "Iowa Voices." She and her husband have two children and live in Boone, Iowa.

A Different Dream for My Child, Part 1

I met author Jolene Philo at the 2008 ACFW Conference. It was one of those divine appointments at the banquet table the last night of the conference. We quickly connected over our mutual passion for ministering to the chronically ill and their families. She told me about the book she was writing for parents of children with chronic illness. Now, a year later, Jolene's book A Different Dream for My Child: Meditations for Parents of Critically and Chronically Ill Children was published this month by Discovery House Publishers.

Jolene's son was hospitalized many times as he battled a life-threatening birth defect. In A Different Dream for My Child, Jolene shares her own often heart-wrenching journey as a parent of a special needs child, and also includes the experiences of other parents. Written in a devotional format, comfort, encouragement, and hope permeate each devotional. Practical tips are interspersed throughout the book. I highly recommend this book to parents of chronically ill children as well as to those who desire to assist parents in this difficult situation. This book will touch your heart. Warning: you may need a tissue or two while reading it.

I'm pleased to welcome Jolene Philo as my guest for the next two days. If you would like a free copy of A Different Dream for My Child, please leave a comment. I'll draw the name of the winner on Tuesday, September 22.

Welcome, Jolene! Why did you write a book on the topic of serious childhood illness and the needs of parents of seriously ill children?
In 1982, our son was born with a serious birth defect. Immediately he was flown 700 miles away for life-saving surgery. He spent almost three weeks in neonatal intensive care. In the next five years he had a total of seven surgeries and countless medical procedures. Because of the distances involved, we were uprooted from our family and other support systems. Even though our son recovered and our faith grew through the experience, I've never forgotten how isolated and alone we felt. I couldn't find any books that offered the guidance and comfort I needed. For years I waited for someone to write a book for parents in similar circumstances, but no one did. Finally, I realized maybe God wanted me to write it.

When a child has a serious illness or condition, the focus in on the child, but the parents must need support, too. What kind of support do they need?
They need logistical, financial, emotional, and most of all spiritual support. The health care community is pretty good at helping parents negotiate the first two, but the last two require more resources than they can offer. My book and website, Different Dream for My Child. provide parental support. But, neither are substitutes for the presence of family, friends, and church family. Parents need someone to sit beside them while they cry, someone to support them so they can support their sick children.

The outward changes of the lives of parents of very sick children are visible. But what internal changes do the parents experience? How does this affect them spiritually and emotionally?
Our culture promotes the belief that we can control every aspect of life. When a child becomes seriously ill, the illusion comes crashing down and parents begin asking questions. Why is this happening to us? How could a loving God allow children to suffer? Parents need to know that their questions and feelings are normal. They need permission to question God and express their doubts. They need to know other parents have been where they are and how they survived. Otherwise, it's very easy to blame God, to doubt the existence of a loving God, and to lose faith.

Friends and family often want to do something for the parents of a seriously ill child, but don't know what to do or how to approach the parents. What suggestions do you have for them?
When offering help, be specific. Instead of saying, "Let me know what I can do to help," say, "I'll mow your lawn while your child's ill," or"I'll organize meals three times a week." At Different Dream for My Child, I've posted a three part blog series with suggestions of things to do for parents of sick children. The list isn't inclusive, but it's a great place to get ideas.

Thank you, Jolene! I know the Lord will use your book to minister to many hurting parents.

Please come back tomorrow when I'll continue this discussion with Jolene. We'll talk about how to support other family members, including siblings of the ill child, and how to support parents when the unthinkable happens and their child dies.

About the Author:
Jolene Philo has been a teacher for 25 years and has published numerous articles on parenting a special needs child and preparing children for a hospital stay. She is a regular contributor to a regional monthly women's magazine, has spoken to MOPS groups, and is a commentator for Iowa Public Radio's "Iowa Voices." She and her husband have two children and live in Boone, Iowa. For more information about Jolene Philo and her book A Different Dream for My Child, visit her web site at Different Dream for My Child