FamilyConnect

After the severely premature birth of our first child and a five and a half month hospitalization in the NICU, we cocooned at home for two months. I simply wanted the world to stay away so that I could just enjoy my baby. We accepted two early intervention professionals weekly into our home, but that was it.

In time, my Blind Babies Foundation (BBF) counselor encouraged me to do a few things, like meet blind adults and ask questions. Other things I did because I was curious or because they felt right.

Here’s my short list of what I did before my baby’s first birthday to feel that I was facing the reality of blindness by empowering myself with experiences:

• I subscribed to “Don’t lose your child to the disability.” Very critical first step, very sage advice.
• I met a mom for brunch. She had raised a blind daughter who was a college student at Stanford University, majoring in physics and religious studies. This was a very powerful 90 minutes in my life with profound impact and hope.
• At the mom’s suggestion, I got on Seedlings’ (print/braille books) mailing list and ordered six books to read to my daughter. I did this even though I thought she was way too young for books. “Touch and Feel” and “Scratch and Sniff” books with braille dots to feel with tiny fingers were a huge hit early on. She clearly enjoyed the experience of cuddling and reading.
• I attended the National Federation of the Blind state conference to confront the world of blindness head on.
• I met parents of older kids who are blind and in my school district.
• I began to seek assistive technology that would make the world accessible to her later.
• I read a book that my BBF counselor brought to me: Small Victories: Conversations About Prematurity, Disability, Vision Loss and Success, by Mary Lou Dickerson.
• I sought out blind adults for lunch meetings and asked, “What did your parents do really well as you were growing up? What do you wish your parents had done differently?” I learned a wealth of information from asking these two questions.

Yes, it’s a lot for the first year, especially when you consider that I spent the first five and a half months of that year in the NICU with my baby girl after her birth at 25 weeks, weighing one pound, two ounces! But I needed to do these things right away, to get rid of the terrible feeling of helplessness.

I’ve always believed that “knowledge is power, ignorance is expensive.” For me, this is what helped me overcome the grief and get on with the business of raising my child and becoming her advocate.

—Grace Tiscareno-Sato
Mother of a six-year-old daughter with retinopathy of prematurity
San Francisco Bay Area, California