Tips for Supporting Parents of Chronically Ill Kids

 

 

JosiahSleepinginBlanketThe call came two weeks ago. My newborn grandson had been taken to the hospital. First to a regional hospital before being sent on to a children’s specialty hospital.

 

For five days, family members and friends were on pins and needles as tests were conducted and results came in. His parents were under enormous stress.

The children’s hospital is an hour from their home. They own one car (truthfully, about 3/4 of a car if you only count operational parts). Dad is in nursing school and holding down a full-time job. Mom was recovering from a less-than-textbook Caesarean delivery. But those things were peripheral. Their baby was sick.

 

The unknown is always stressful for parents of sick children, but the known can also hold fear.

Fear that your child will live with a chronic condition…a lifetime of pain…unexpected challenges.

Fear that your child will experience suffering.

Fear that your child will be diagnosed with a terminal illness.

Today my grandson is home…diagnosed with a problem that will require monitoring but that doctors predict he will outgrow in a matter of months.

We are grateful beyond words, but we carry the awareness that many parents, foster parents, guardians, and loved ones in children’s hospitals across the nation face a different prognosis. They did not come home in a matter of days. They live splintered lives. Like other dear friends of our family, they have a child who will live the majority of her time in a children’s hospital with one parent at her side while the other remains hours away at home with her siblings. The scenario may differ for individual families, but the reality is the same for the families of 15-18% of children in the U.S. who live with chronic illness.

Families of chronically ill children live in a constant state of stress, challenged by conflicting and overwhelming emotions.

They often live separated from one another, with one parent caring for the sick child in the hospital and the other at home with the siblings. Single parents are often forced to leave their healthy children in the care of others.

Finances are strained by costs of transportation, food, medical costs, and the incidentals of “hospital life.”

Siblings’ social and emotional lives are disrupted, and they often experience anger, guilt, and resentment.

Living under the constant shadow of medical uncertainty isolates families and makes it difficult, if not impossible for them to maintain a social life.

The church needs to heighten awareness about how to support families of the chronically ill.

What can you do to help those who are caring for chronically ill kids?

  •  Learn about resources in your church and community. Lotshelpinghands offers practical tools for providing meals, helping with errands, and organizing other assistance.
  • Listen without judgment and ask how you can help. Parents are caregivers for the long haul. They need friends who will listen, ask questions, and support them. Don’t feel like you have to quote scripture or give an easy answer.
  • Ask what support looks like to your friend. Do they need support at the hospital or privacy? Do they need help back at the house or a prayer vigil? Does a child at home or in the hospital need a birthday party? Do they need a break from the hospital to be home on Christmas morning with the other children?
  • Check out resources at a DifferentDreamforMyChild. Author Jolene gets real about the challenges of special needs children, the families who care for them, and how you can help.
  • Step in. Be specific and ask if you can help financially, with cooking, cleaning, errands, home repairs, loving on a sibling, buying gift cards or gas cards, overseeing snow removal for the winter, offering your jacuzzi tub once a week or your vacation home for a getaway.
  • Organize a prayer team.Caregiving families need specific prayer for tons of things:
    • finances
    • transportation challenges
    • maintaining a household
    • finding time to focus on individual family needs
    • creating a routine that works with the challenges of changing medical needs
    • exhaustion and burnout
    • kids who feel left behind and abandoned
    • stress on relationships
    • dealing with the realities of medically-related trauma
    • sorting through emotions: guilt, anger, frustration, abandonment
    • finding support groups, individuals, churches, and networks where they feel accepted and can share the realities of the circumstances.

We’re grateful our grandson is home and his health issue is expected to resolve. Our gratitude has opened our eyes to the need and increased our desire to bless others.

What about you? Have you as a caregiver been the recipient of blessing from others? In what ways can you reach out?

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