To the Editor:
Re “If My Dying Daughter Could Face Her Mortality, Why Couldn’t We?,” by Sarah Wildman (Opinion guest essay, Dec. 1), about her daughter Orli:
Ms. Wildman’s moving essay so poignantly captures the challenge and the heartbreak of caring for a child with a very serious or life-limiting medical condition.
Any parent who has accompanied their child (or really, anyone who has faced death with a loved one) very likely will have found a dearth of clinicians willing to speak the unspeakable. Or, the clinicians will employ euphemisms that are frequently misconstrued by families clinging to hope.
As Ms. Wildman notes, palliative care is an oasis on which families live — if they are lucky enough to find it.
Through years of conversations with families and clinicians, and through qualitative and quantitative research, Courageous Parents Network has identified another essential oasis: the voices and perspectives of others who are living, or who have lived, this journey.
These individuals and families contribute their experience to help normalize parents’ fear and grief — and, as a legacy to their own child, to offer assurance that the survivors cannot just make it through but quite possibly thrive on the other side.
Blyth LordNewton, Mass.The writer is the founder and executive director of Courageous Parents Network, a nonprofit. Her daughter Cameron P. Lord died in 2001, age 2.
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