Sharing Wisdom Contributors are lending their insights and experience as caregivers, bereaved parents, as well as those who care for and care about seriously ill children and their families.
Five-hundred-thousand children in the U.S. are living with chronic medical conditions, many are dependent on technology for support. Pediatric palliative care continues to be a dirty word among medical professionals. Because of that, families are left unnecessarily burdened and overwhelmed.
Caregiving a seriously ill child can take its toll emotionally, physically, financially and spiritually. Sharing Wisdom offers a safe place for families in crisis who are managing the sea of uncertainty. Stories on this site help give practical information, empathy and much needed perspective on caregiving and end of life issues. Providing caregivers with ideas on how they can advocate for their children across the care continuum while at the same time giving ideas on how to take care of themselves and their relationships with others. Many stories talk about balancing quality of life with quantity; keeping the big picture in mind for their children and their family as they grapple the medical decisions that have lifelong implications. Sharing Wisdom offers families a breath when they forget to take one. We are giving voice to experience while redefining the meaning of hope.
End of life issues often aren’t discussed with families until it’s too late. Families are often cut loose from hospitals when “treatment” is no longer an option, leaving families to fend for themselves. Services continue to be scabbed together without continuity of care. Sharing Wisdom gives clinicians much needed insight into the lives of families in their care. We tell stories that help advocate and inspire clinicians as well as policy makers to broaden their ideas of what “family centered care” can and should look like for families like ours. Our stories continue to promote and inform best practices. Some of our stories come from what didn’t work while others can attest to what did/does.
Over fifty-thousand children will die each year. A large percentage of those children will die in pain. Families left unsupported will feel the ripples of loss for generations. Sharing Wisdom can offer a safe harbor for grieving families. We talk about end of life issues, bereavement and most importantly...how to survive the loss of a child.