When children are in the hospital, it can be a frightening experience: not only for sick kids but also their parents. Some moms and dads are thrust into the foreign world of intensive care with the birth of a premature baby. Many parents with a baby in the hospital also have older children, so must make additional decisions about ways to help kids at home. If instead of a baby, it’s an older child who is sick, mom and dad must also decide how much to tell that child, preteen, or teen about his diagnosis and upcoming treatments.
Thankfully there is a wonderful new resource for parents of children with special needs. Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs, by Jolene Philo (published by Discovery House) offers parents immediate support and practical help.
Jolene experienced the issues she describes in her book firsthand, when her newborn son (now a young man) had a life-threatening birth defect. As a young and inexperienced mother, Jolene was stunned to have to make a snap decision to have her baby flown to a hospital in another state for surgery. Her son had additional surgeries when he was older.
Jolene doesn’t use merely her own experience, however. She also interviewed dozens of other families. Each chapter in her book begins with poignant stories from families who have had very sick kids. Jolene, a teacher for 25 years, does her research well, so her book is also jam-packed with links to helpful websites and organizations.
In the beginning chapters of the book, Jolene deals with the immediacy of being in a hospital with a child in crisis. She helps walk parents through:
- the shock of a scary diagnosis
- how to find additional information about that diagnosis
- ways to be an advocate for their child
- how to get a second opinion
- the need to assess insurance coverage/finances
- clarification of hospital routines (sleeping/eating arrangements for family)
- understanding which medical personnel will do what for their child
- how to communicate effectively with medical staff
- how to manage transportation issues to and from the hospital
- how to see medical procedures from a child’s point of view
- how to create (or how family members can create) helpful care packages for a child and/or her parents.
Those first few chapters alone lead the reader to dozens of helpful outside resources, related to diagnosis and treatment. For example, to get more information about a child’s diagnosis, parents can visit Seattle Children’s Hospital’s Center for Children with Special Needs: http://cshcn.org/diagnosis-information (See: Diagnosis Information). One travel resource, among seven Jolene lists, is Angel Flight: www.angelflightmidatlantic.org. Online communication tools Jolene recommends to keep friends and family in touch with a child’s progress include Care Pages at www.CarePages.com and Caring Bridge at www.caringbridge.org.
The second set of chapters in Different Dream Parenting addresses coping with relationships: how having a sick kid impacts marriage, relationships with extended family and siblings, and each parent’s relationship with God. I’ll cover that in my next post, Part 2. The third section, on long term care (or loss) of a special needs child, I’ll cover in Part 3.
Throughout the book as a whole, Christian faith related issues are seamlessly integrated, including brief prayers and applicable scriptures. Jolene does not do this lightly: she’s not afraid to directly address some of the most difficult questions parents of critically ill children ask God. She also addresses the tumultuous feelings that accompany those questions.
For today’s post on children in the hospital, I asked Jolene to offer those of you with sick kids (or those with friends or family with sick kids), some encouragement. Here is her response:
“When your child is in the hospital, the health care professionals – doctors, nurses, therapists, and technicians – are primarily focused on your child. But you’re well-being as a parent is important, too. So tap into the hospital professionals who focus on giving parents TLC. Don’t try to tough it out yourself. Call the chaplain’s office, the department for family centered care, a hospital social worker, or the child life specialists office - and tell them you need help. You are your child’s voice in the hospital, so take care of yourself!”
Stay tuned for Part 2!
Laurie
To read the introduction to Jolene’s book in PDF, click HERE. To purchase a copy of Different Dream Parenting for yourself, or for friends or family with kids in the hospital, contact any bookstore or click on her book photo to my Amazon aStore: Great Parenting Books. A great companion to the nonfiction book Different Dream Parenting is Jolene’s devotional book, A Different Dream for My Child: Meditations for Parents of Critically or Chronically Ill Children.
