A Different Dream for My Child: Jolene Philo Shares

Jolene Philo has written a much needed book to encourage parents and family members of chronically ill children.  A Different Dream for My Child exemplifies the call of 2 Corinthians 1:3-4:

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

Jolene knows what it’s like to be in the shoes of those she aims to comfort.  In this short interview, Jolene opens a window into the heart of a parent but also the heart of a Servant Writer who’s using her story to serve the needs of others.  Leave a comment or a question for Jolene at the end of this interview and enter to win one of three copies of A Different Dream for My Child.

Can you briefly tell our readers what inspired you to write A Different Dream for My Child?

Our son was born in 1982 with a birth defect and was immediately flown 700 miles away for life-saving surgery. Over the next five years he had a total of seven surgeries and countless hospital procedures. Through it all, I wished for a book or person to address our family’s spiritual needs and faith struggles. Several people helped us, but I never found a book for parents of sick kids. A few years ago, I realized that God was calling me to write A Different Dream and to develop my website, www.DifferentDream.com as an online resource for parents.

Who is your target audience for this book? Should people who don’t have children with special needs read this book?

The target audience for A Different Dream for My Child is parents of children with critical illness, chronic illness, special needs or parents who have lost children. But the reading audience goes far beyond the target group. Certainly, people who work in pediatric health care and hospital chaplains can benefit from the book. Also, pastors who often counsel families of sick kids will find it useful.

But beyond that, friends and extended family members will gain insight from it. They will better understand the emotional and spiritual needs of parents. They will learn how to communicate with and help families immersed in a heath crisis.

Would you consider yourself a Servant Writer, someone who writes primarily to serve the needs of others? What other reasons compel you to write?

Yes, I do consider myself a Servant Writer. My desire is to use what God has taught our family through our son’s health crisis and through my father’s thirty-eight year battle with multiple sclerosis to encourage others. I want families to know what I have learned to be true: life can be good even when it isn’t perfect, even when it’s tragic.

Since childhood, I have loved to read stories and tell stories. The parables of Jesus brought me to Sunday school week after week and eventually led me to faith in Him. As an elementary teacher for twenty-five years, I saw how stories helped kids learn hard concepts easily. The power of story compels me to write more than anything.

Your book deals with the topic of serious childhood illness and the needs of parents. This topic often makes people uncomfortable. Why do you talk about it?

Excellent question. I talk about serious childhood illness because it’s a fact of life. It isn’t going away. In fact as modern medicine saves more premature babies and accident victims, the number of chronically ill and special needs children is growing rapidly.

Parents need to know their anger toward God, their questions about his existence, their guilt, and their despair are normal responses to their circumstances. They need support, not silence, if they are to find hope and live joyfully in spite of their child’s illness.

People who don’t have special needs kids need to talk about the subject so they can be supportive, not silent. When they see families with special needs children, their first response shouldn’t be, “What do I say?’ but, “How can I help?”

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 have to avoid isolating themselves. They have to let people in, tell them how they feel, and keep sharing as they walk through the long road 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 DifferentDream.com provides links to a number of organizations and some excellent books.

Also, parents need to realize that their healing will be slow. As one father in Different Dream said, “The grief process takes a long time. You have to allow it – instead of going after it – so let it wrap itself around you.”

If it’s hard to approach the parents of a seriously ill child, it’s even more 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?

My child lived, so I don’t consider myself an expert in this area. But several parents who lost children graciously shared the wisdom they gained through grief and loss. In memory of their children – Beth, Christopher, Shawn, Ethan, Sherri Lyn, Joe, and Danielle – here are their answers.

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 mentioned earlier.

Also, be sure to use the child’s name when talking to grieving parents. For some reason, 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.

The outward changes in the lives of parents of very sick children are visible. But what internal changes do the parents experience? How do these changes 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 delusion comes crashing down and parents begin asking questions. Why is this happening to us? How could a loving God allow children to suffer? As I mentioned before, parents need to know 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.

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 actively involved in the treatment plan. I think that sense of helplessness afflicts all extended family members.

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

How has this book expanded your ministry or opened doors for you to minister to families with chronically ill children?

My credentials haven’t changed. Before the book came out, I was the parent of a special needs child, an educator with twenty-five years of experience working with special needs children, and the daughter of a chronically ill parent. I’m still the same person, but for some reason, the publication of the book lends credibility to my ministry, and I’m so grateful.

Since A Different Dream for My Child was published, I’ve been speaking more often. After every event, people talk about their children who have overcome great obstacles or are still struggling or have died. Hearing their stories, praying for their families, and laughing and crying with them, and encouraging them is such an honor. Also, getting notes from families who have read the book and found comfort in it tells me Different Dream is meeting real needs.

The book also led to the launch of www.DifferentDream.com in mid-August. My hope is that parents of hospitalized children will find it and will become part of an online community. The website and the book are still quite new, and much remains to be done to expand the ministry. Blog postings like this one are an important way of doing so. Thanks for giving me this opportunity.

Above all, what do you want your readers to take away from this book?

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 exactly how they feel. His Son died on the cross, so He knows the pain of separation caused by the loss of a dearly loved 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. That reality was a rock of comfort during our son’s long illness. I pray it will be the hope of struggling parents, too.

Jolene Philo is an inspiring speaker. She has spoken to MOPS groups and is a comentator for Iowa Public Radio’s “Iowa Voices.”  Learn more about Jolene and her ministry, www.DifferentDream.com.  And don’t forget to leave a comment for a chance to win one of three books Jolene is giving away through Writing to Serve in the months of September and October.