Interview with Jolene (and remember that for every comment you make you have a chance to win her book!)
1. 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, church, support system and community. Even though our son recovered and our faith grew through the experience, I’ve never forgotten how isolated and alone we felt. When the ordeal began, 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 do it.
2. When a child has serious illness or condition, the focus is 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, www.DifferentDream.com, 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.
3. 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 you’re child’s sick,” or “I’ll organize meals three times a week and call with the schedule every Tuesday.” At www.DifferentDream.com, I’ve posted a three part blog series with a total of fifteen things to do for parents of sick children. The list isn’t inclusive, but it’s a great place to get ideas.
4. The outward changes in the lives of parents of very sick children are visible. But what internal changes do the parents experience? How does it 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? 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.
5. 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.
6. 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.”
7. If it’s hard to approach the 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 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.
8. If you could choose one statement of comfort or encouragement that readers come away with after reading A Different Dream, 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 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.
Check out the book review at A Different Dream for My Child #2
Book trailer at A Different Dream for My Child#1
You can leave comments on any of these posts for a chance to win the book!
