In the summer of 2000, I had a brief conversation with my first baby’s physician. It was a conversation that changed everything: for me, for my baby boy, and for the hopes and dreams I had held for him since long before he arrived in this world.
“Your baby is blind,” he said.
“How blind?” I asked.
“Braille and white cane blind.”
“Will he play baseball?” I choked.
“No. He will not.”
“Will he drive?” I sobbed.
“No. You are going to have to learn the tools of blindness and raise him the best you can. There is no hope for a cure. Good luck.”
It was the end of a three-month nightmare: grueling tests no child should endure; long trips to specialists that no family should have to embark on; and nervous walks down narrow hallways to exam rooms built for two people, not the entourage of “stuff” that a newborn requires. Three months of tests that were inconclusive, doctors that were stumped, and two new, overwhelmed parents that were running only on the fuel of worry.
My baby was finally diagnosed at nearly 6 months with Leber Congenital Amaurosis (LCA). It is a rare disease. It is a severe disease. I was told if my baby had any vision at all he’d lose it by his teen years.
I was supposed to be enjoying my baby’s first smiles… and first coos… and first everythings. Instead, I was consumed with mountains of fear and sadness that I couldn’t see the top of, let alone climb up and over. I had absolutely no idea what the journey ahead would look like. As the hundreds of thousands of people living with rare diseases know, a rare diagnosis typically means your path ahead will be anything but typical.
Until my son was born, I had never met a blind person. Ever. I had no training or resources in raising my blind son. But I did have one piece of what the doctor said playing over and over again in my mind: Learn the tools of blindness. I wasn’t happy or excited about it like I typically am with learning something new, but nonetheless I set out to learn what my son needed to learn. I subscribed to an email list of LCA families and sobbed day after day reading message after message describing braille instruction, white cane lessons, special schools, IEPs—ugh—the list went on. I made notes of the tools I would need to learn. I scheduled an Early Intervention vision therapist to work with my baby. I joined an in-person playgroup for moms and visually impaired children. I went to conferences where I met families raising blind children and spent time with parents of older blind children to get an understanding of what to expect.
For three years I gathered the tools my son would need to “survive” his blindness. I was surviving as well; and then the unimaginable: my second baby was diagnosed with LCA, too. This time, the devastation was not as great, the sadness was not as deep, and the fear was not as debilitating. You see, I had the best resource of all right in front of me: my first son was then 3 years old, and he was literally the happiest child in town! He had no problem with his blindness because he was learning the tools he needed to do the things he wanted to do.
Fast forward a few years and I ended up having the incredible blessings year after year to add the most impactful resource of all to our collection: role models. My boys have met successful blind adults who are chasing their dreams and living their passions. They demonstrate how not to just “survive” blindness, but to thrive. My guys, Michael and Mitchell, are thriving indeed. They attend our local public schools. They are athletes, musicians, student council members, theater performers and International Braille competition finalists, too! They attend programs for blind children to meet others like themselves, and they attend programs for all children to find others that enjoy the same things they do. Now, at 16 and 12 years old, they have big dreams for their futures, just like their sighted sister does.
The journey of raising my children has definitely been different than planned, and things appear to be changing again. After accepting the fact that my boys would be blind for life, our path is now taking a long-awaited turn toward the possibility of sight restoration, thanks to the gene therapy research happening around the globe. While once again faced with an unfamiliar course and an uncertain outcome, we are more ready this time. We had the boys genotyped to uncover the genetic mutation responsible for their blindness. Knowing their CRB1 mutation has allowed us to connect with other families like ours, support newly diagnosed families, and work with researchers who are studying their specific retinal disease. We established the Curing Retinal Blindness Foundation as a resource for those affected by CRB1. The organization and its website offer tools and information that patients and their families might need for living with this disease.
My guys are fortunate to have a wonderful foundation and optimistic outlook for their future, and I know for certain that wherever our journey takes us, my children are confident and comfortable pursuing what is right for them.