Helping Families Care for Chronically, Critically, and Terminally Ill Children

 

My friend Johnny was recently diagnosed with a pontine glioma–an inoperable tumor growing inside his brain stem.

Johnny is seven.

On Monday Johnny was engaged and energetic. On Wednesday he was inert and exhausted. By the end of the week, his parents received his terminal diagnosis and had moved their family of seven–with children ranging in ages from one-and-a-half to ten–from Arkansas to St. Jude’s Children’s Hospital in Memphis, Tennessee. St. Jude’s offers cutting-edge experimental treatment for pontine glioma.  Within days, three churches surrounded Johnny’s family: their church of ten years in Michigan, their new church in Arkansas after a recent move, and a church in Memphis that quickly “adopted” them.

Two hundred children each year across the globe are diagnosed with pontine glioma. The long-term survival rate is grim, at best. Johnny’s family is fortunate to be surrounded by the support of an army of Christians across the nation and quite literally, around the world. Johnny, his siblings and parents receive a steady flow of packages, cards and letters, email, calls, and visits from friends, loved ones, and total strangers.

In the middle of the chaos and the grief, Johnny’s family considers themselves, in many ways, to be “blessed.” Every day they meet mothers, fathers, and families torn by isolation, guilt, exhaustion, loneliness, fear, and crushing financial burdens. Many parents don’t know the comfort of a ringing phone, a care package, or gas cards slipped into their hands.

The Role of the Church

Every church in a community with a children’s hospital should consider participation in a coalition that reaches out to parents of critically and chronically ill children. If your community doesn’t have an outreach to parents of chronically, critically, and terminally ill children, consider starting one. While parents such as Johnny’s do need money and financial provisions, their hearts often ache for the simplest things: gifts of time and the freedom to create memories. Respite for “dates” with their spouse or other children. Invitations to parties and outings for siblings trapped with hospital walls. Extra arms to hold their child so they can take a much-needed nap. Someone to invest a few hours and a few dollars fixing the filter on the family pool so they can make special memories in those final months. The luxury of a manicure, pedicure, or haircut. A soul willing to sit and play games, read books, color, or just talk. The list is endless.

Where Do I Start?

Begin by calling area churches and your local children’s hospital to see what services or programs might be in place and how you might plug in. Visit the hospital and ask to speak to a social worker to learn more about the needs of families and how you might be able to coordinate an effort within your church. Help to create a network of individuals within your own church who can offer respite and assistance to families with children with special needs.

More valuable information on this topic is available in an excellent book by Jolene Philo, A Different Dream for My Child. More on Jolene’s book in our next blog posting.

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10 thoughts on “Helping Families Care for Chronically, Critically, and Terminally Ill Children

  1. My heart aches for Johnny and his family. Thank God that there are churches who are helping them during this difficult time.

    I will have to check out Jolene’s book. The title alone makes me want to pick it up and read it.

    Thanks for sharing your thoughts.

    • Jolene’s book is excellent. I’d recommend that people purchase several copies–one for their church library and others to give away to parents who would be encouraged by the practical resources and spiritual wisdom.

  2. Shelly,

    My heart also aches for Johnny and his family–because I have lived this. My son Andrew was diagnosed with the same brain tumor in October 2007 and died at the age of eight on December 4, 2009.

    I am a pastor’s wife in the Lansing, Michigan area, and I have been contacted personally regarding Johnny by two people with ties to both his family and ours. We are willing to do anything we can do to help this dear family.

    Your point regarding the place of the church in all of this is a good one. The terminal illness and/or death of a child are not common in today’s world–though I know now that these things happen far more frequently than we realize. We have found that the church, in general, is like many other groups–ill-equipped to handle this type of situation. Knowing what to say or what to do tends to come from personal experience; most people don’t have that. But the things you suggest in the way of offering support are a good start.

    Sandy
    Always proud to be Andrew’s Mom
    http://www.caringbridge.org/visit/aws

  3. Dear Shelly,

    Thanks for blogging about this important topic. There is so much churches can to do to support families of hospitalized kids. Whether or not the diagnosis is terminal, being in the hospital with a child is traumatic. What a time for the church to sprout legs and walk alongside the families. I look forward to working with you to get the message out!

    • Thanks so much for your response, Jolene. I really appreciate your insights, especially since I’d like to feature your book “A Different Dream for My Child” on my next blog. Parents of critically or chronically ill children can find great resources at your website, differentdream.com.

  4. Our 18 yr old son was diagnosed with a rare heart condition in April, doctors here in Oregon couldn’t help him so we found ourselves at the Cleveland Heart Clinic in July where my son underwent open heart surgery to repair areas of his heart and replace his mitral valve. My heart hurts for families that are far from home, isolated from their network of support from family and friends. A dear friend of ours has a sister that lives in the Cleveland area who we had never met. She called me the night before surgery and prayed with me for my son on the phone and insisted on coming to the hospital and waiting with my husband and I as our son was in surgery. We were so glad that she came! The waiting was excruciating, and having the distraction of talking with someone made the waiting bearable. We met so many people caring for their loved ones who had been there several weeks, even months so bone tired and all alone. Those hospitals are amazing places of healing, but they also take the most critically ill. It was not uncommon to look over the lunch table and see silent tears sliding down a mother’s face. I know I had “my” bench that I would sit and more times then not that was when I would cry, you have to keep it all together when you are with your child. This idea of getting area churches together to help these families is not only a great idea, but so needed! We have a children’s hospital near our home and I have tried to think of ways that I could reach out to families. One idea I had was to put together care packages for the waiting families like bags filled with bottled water, healthy snacks, magazines, hand sanitizer, etc. You’ve inspired me to make a difference in my community! Thank you! Juli

    • What a wonderful idea. I’ve spent long hours in hospitals at the side of loved ones and friends. Any personal touch makes an enormous difference in the lives of caregivers who so often live for weeks and months in isolation. Your story is an inspiration to others. Thank you so much for sharing it here.

      I would encourage other people to think about how they could share their gifts in similar ways.

    • Juli, I know of several parents who have started ministries at nearby children’s hospitals similar to what you are describing. I’ve helped several purchase my books at a deep discount so they can afford to put them it the care packages. If you’re interested, contact me either on Facebook or through the contact page at DifferentDream.com.

      • Juli, Jolene’s books are hugely helpful to parents. I can’t endorse them more highly. Be sure to check out her website, and if at all possible, bring her to your area as a speaker so parents in your region can be encouraged.

  5. Sandy, I’m so sorry to hear of your loss. The death of a child is devastating, and I’m sure you have much to say to encourage others. Thank you so much for your willingness to reach out to Johnny’s family. Their updated information is available through Facebook. You can look for Amanda Teis or Prayer/s for Johnny. I know they would love to receive your encouragement. Shelly

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