Our Story

Just a few weeks after giving birth to my son, the doctors informed us that his right eye contained no vision; it was congenitally small (microthalmic) and would need to remain under supervision. Months later, following a retinal detachment, a diagnosis of glaucoma and an optic nerve cyst, our son’s right eye was removed – a necessary decision we had hoped we’d not be forced to make.

During a four hour surgery, just ten days following his first birthday, an orbital implant was surgically attached to our son’s extra ocular nerve. Weeks later we visited a prosthetics specialist who created a prosthetic eye. The removable eye was painted to match his left, and was placed over the orbital implant (created from an ocean coral called Hydroxyappetite).

Because the eye was removable, our young son found great pleasure in popping it out. He would do so in order to chew on the eye or to hide it in various locations (inside toys, cereal boxes, etc). In an effort to re-direct that behavior, I sought to find a solution that would work for our unique situation.

Along with the use of his new eye, our son was instructed to wear a pair of glasses – in order to protect his left eye (in the event of a fall or accident). He struggled with his glasses daily, pulling them off and leaving them in an assortment of locations.

My mother suggested that I create a personal book for our son, addressing each issue. I searched for a company that might be able to help me, but came up empty. I decided to create two books at home. One book addressed the issue of my son’s new eye, the other focused on his need to keep his glasses on in order to protect his left eye. Each story page featured photos from our personal collection: photos of the prosthetic eye, of our son, of family members who love him. Photos of his glasses, of family and friends who also wear glasses, and of the objects and items that could potentially damage his left eye if his glasses were not worn. I had each book laminated and bound.

I read the books to my son daily. They impacted his behavior dramatically and we soon passed through that season of our lives…and into another. When our son entered preschool, I requested that his teacher read the prosthetic eye story to the class – in order to open up the lines of communication between my son and the other students.

Oftentimes fear of the unknown is all that separates us from those we do not understand.

Again the book was read in Kindergarten and in first grade. By second grade, all of my son’s friends were well aware of his situation; so much so that it no longer mattered to any of them. It was old news.

The books have been an invaluable tool in our son’s life. If you choose to order a Personal Child Story, it is our hope that it (or they) will also bless your child’s life in countless ways.