Serious pediatric illness disrupts much more than the health of one person. It impacts family dynamics, emotional resilience, daily routines, and finances. My picture book, Daniel and His Starry Night Blanket: A Story of Illness and Sibling Love, tells the tale of a small boy whose older sister gets cancer and, from his perspective, far too much of their parents’ attention. This is one family’s story, but the emotions Daniel and Kate experience are often present in families with similar health challenges.
When a child’s health is threatened, parents naturally focus on helping that child to get better. They are reluctantly plunged into a medical world with unfamiliar language, treatment choices, and outcome predictions. They may need to be away from home for the ill child’s treatment and may become temporarily less emotionally available to their other children. In such a situation, young siblings may feel lonely, sad, scared, angry, guilty, and even envious. The younger the healthy sibling, the less cognitive and emotional maturity, and hence impulse control, she or he will have. Yet a young child who cannot fully understand a health crisis often will respond—as if barometrically—to parents’ or siblings’ emotions, which can be distressing to even the healthiest and most independent of young children.
Shaping a new pattern of family life
In the midst of their own distress and their ill child’s needs, parents must create a “new normal” that continues to provide structure, security, love, and comfort for all their children. The challenge is especially hard for a single parent home or for one where there were significant relationship, behavioral, or financial challenges before the health crisis.
This is a time to be innovative, establish new family patterns, request and accept aid from extended family, friends, and professionals, and make contingency plans for unexpected crises. Accepting help is particularly important in such a time of fear, confusion, and depleted emotional energy. Remember the admonition in airplane safety instructions for adults to put on their oxygen masks before trying to assist others? Help—whether an hour of childcare, a delivered meal, a warm hug, or professional guidance—can provide such “oxygen” to a parent.
Finding innovative strategies to protect family resiliency
How do you safeguard the resiliency of your family life when you are on a scary, unpredictable medical journey? Core attributes of such resiliency include deep loving bonds that are demonstrated and nurtured on a daily basis; a robust, predictable, yet flexible structure of daily living; a commitment to honesty, empathy, and caring toward one another; and rich, focused time together.
The strategies below are organized under these core elements of resilient family life. They focus on the needs of a young healthy sibling during a family passage through serious pediatric illness and treatment.
Continue connection and affection:
- Frequently express affection. Snuggle and cuddle!
- Assure continued access to a child’s security object, such as a blanket or stuffed animal.
- Reassure the child of continued love and caring.
- Provide photos of parents and the ill sibling for the healthy child to keep and display.
- Facilitate quality time together for the healthy and ill children, whether in favorite or new ways.
- Help the healthy and ill children, as possible, to make pictures and cards for one another.
- Encourage the wider family to frequently spend time with and express affection for the well sibling.
- If you must be away, tape favorite bedtime stories ahead for the healthy sibling.
- Ask the child to take care of some item associated with you, such as a hat, shirt, or bed pillow.
- If a youngster regresses significantly in achieved milestones or behavior, talk to the pediatrician about a possible need for psychotherapy.
- Avoid the temptation to shower the child with physical gifts.
Provide predictability and structure:
- Maintain family routines as much as possible for meals, play, naps, and bedtime.
- As possible, anticipate and explain changes in routines with reassurance.
- If away, stay in daily touch by phone, mailed drawings, and/or Skype.
- Maintain consistent behavioral expectations for the younger child, to provide a safe family environment, yet be more forgiving of relatively small infractions or challenges.
- Stay in the parent role and let the child be the child, not your caregiver.
- Develop contingency plans for crises (for example, caregivers and meals).
Be honest and empathic:
- Acknowledge a child’s illness or condition in terms the younger sibling can understand.
- Reassure the healthy child that he or she cannot catch the sister or brother’s illness.
- Reassure the healthy child that he or she did not cause the illness, even if the kids fight at times.
- Include the child in hospital or clinic visits as comfortable for the young sibling.
- If hospital visits are not possible, share photos of the sibling in the hospital and pediatric unit.
- Read books together about similar situations, such as Daniel and His Starry Night Blanket.
- Encourage the child to share feelings, however intense, and express acceptance of them.
- Listen to and answer a child’s questions honestly, in age appropriate ways. Don’t give more information than is being asked for.
- Show empathy for the healthy child as well as the ill child.
- Include the child, as age appropriate, in comfort care for the ailing sibling.
- Praise kindness to and sharing with the ill child.
Be playful and focused:
- Honor regular, private one-on-one play with the healthy child, with emphasis on involvement and quality, especially when time is short.
- Read and draw together.
- Encourage play that can reinforce a child’s sense of mastery, such as simple puzzles or construction toys like Lego.
- Allow a child to play act their sibling’s situation through puppets or dolls, but do not force play a child is uncomfortable with or impose your interpretation on their behavior.
- Go on excursions geared to the healthy child’s interests, such as walking, biking, or going to the playground, park, zoo, or a movie.
- Arrange special visits for the healthy child with extended family and friends.
- Create mini-adventures lasting just a couple of minutes: for example, search for shapes, colors, birds, creepy crawlers, or anything that will engage the child.
- Facilitate vigorous physical play which can be fun, healthy, and an outlet for anger and frustration (for example, running, jumping, or time on playground equipment).
- Whenever possible play actively, be silly, and laugh with your child, remembering that tears and laughter sometimes mingle.
By adopting and adapting many of these strategies, each family can respond to the needs of all their children in a more tailored and resilient way.
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