I think about the essay Welcome to Holland by Emily Perl Kingsley a lot. Her explanation of what it’s like to raise a child with a disability helps approximate (for me) the unexpected realities that ensue for families who encounter significant pediatric health challenges. Although her essay is not about prematurity and it’s not new, when I sat down to write about World Prematurity Day I couldn’t help but think back to her words and her metaphor. What’s marvelous, of course, is that her essay is built of love so all of us have a chance to understand it.
Sunday, World Prematurity Day, is a day to think cautiously, bravely, and empathetically about the opportunity to improve the lives of children born prematurely, all around the world. When a child arrives early there are obviously significant health challenges not only to survival but to a long life thereafter, sometimes with significant disability. Parents all over world suffer and learn to thrive with and after prematurity every single day. In fact,
Prematurity is the leading cause of death in newborns. Although some risk factors are known for preterm birth, we don’t know very much about the cause.
None of us will really ever know what it’s like to survive and thrive in someone else’s experience. So we share stories, quotes, photos, and moments as best we can to help others understand. As I’ve met and been invited to help care for parents, families and children who are born prematurely, one thing is certain — it’s a journey. It starts often with surprise and evolves individually. The essay by Kingsley is clearly about the journey, not about the diagnosis of prematurity at the time of birth.
Here’s what a colleague and friend, Kim, shared with me about her experience with her twin daughters who were born over three months early: Read full post »