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.