COMING SEPTEMBER 14
I spent years trying to see my son’s future.
He spent those same years building it.
The Life I Couldn't See Yet
"A rare disease can become greedy. It can take appointments, school meetings, money, attention, worry, and family conversations. If you are not careful, it can also take ownership of memories... I did not want that for us."
The Questions I Carried
Would he drive?
Would he go to college?
Would he have a career?
Would he be independent?
Would he be happy?
For years, I wanted answers.
THE STORY BEHIND THE BOOK
This is the story of raising a son with a rare inherited retinal disease and learning, year by year, that his diagnosis could tell me something about his vision, but it couldn't tell me what kind of life he would have.
This is our story.
Because kids don't see their futures the way we do.
What do you do when your four-year-old with a blinding eye disease says he wants to be a monster truck driver?
They don't see diagnoses.
They see possibilities
They don't see limitations.
They make plans
They don't know what they're supposed to be afraid of.
And sometimes, neither do we.
ABOUT THE AUTHOR
Lisa Pleasants is the mother of Brendon, who was diagnosed with XLRS as an infant. Having grown up with XLRS in her own family, she knew the disease, but experiencing it as a mother changed everything.
Her journey eventually led to advocacy and the co-founding of Moms for Sight, Inc. The Life I Couldn't See Yet grew from more than two decades of navigating diagnosis, uncertainty, research, independence, and all the ordinary life happening in between.
The Life I Couldn’t See Yet is the companion I wished I had twenty-five years ago, an honest account of uncertainty, letting go, and learning to trust the life unfolding in front of me. More than anything, I hope it reminds other parents that they do not have to navigate this journey alone. A portion of the proceeds for this book will go directly to Moms for Sight, Inc.
Lisa Pleasants, Author and Co-Founder of Moms for Sight, Inc.