By Catherine Pearson — 2019
“We said we would give the best life for however much time she had.”
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CLEAR ALL
I am haunted by the shocking discovery that our daughter, three, has a condition that may cause her to die in her teenage years. How can I come to terms with this and learn to enjoy the time we have?
When a child’s wellbeing depends on vigilant monitoring and consistent medical attention, the everyday anxiety and stress that all parents deal with is made worse by the fact that failing to keep up with treatment can be a matter of life and death.
Taking care of a chronically ill child is one of the most draining and difficult tasks a parent can face. Beyond handling physical challenges and medical needs, you’ll have to deal with your child’s emotional needs and the impact that a prolonged illness can have on the entire family.
Families—especially those who communicate openly—may be strengthened by experiences associated with managing their child’s health condition or disability.
Children and adolescents with Crohn’s disease deserve particular attention, as they often develop more severe disease, and have more specialized needs, in comparison with adults.
The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases.
The wisdom that Alice Miller shares with us in her famous book, The Drama of the Gifted Child, is something that every therapist who works with children revisits more often than we would like.
Even the most loving, caring adoption begins with separation and loss.
Those who help care for children need to know details about their challenges.
Last week was the one-year anniversary of the beginning of my husband’s health crisis. As I gaze at the permanent handicap placard and at him sleeping, once again, on the couch, I’ve been reflecting on what I’ve learned this past year.
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