by Kristin Smedley
I spent nine months memorizing What to Expect When You’re Expecting. In my pregnancy, everything the book said to expect happened at or before the timeframe it predicted. My baby grew inside me at the perfect rate, made all the right movements perfectly on schedule, and even arrived into the world in perfect health and with a perfect little smile as soon as the nursery was complete. The pregnancy went so perfectly that I was certain my plans for this little human would come to fruition: starting pitcher, valedictorian, summa cum laude graduate….
I admit it – I was one of those people – the kind where the things in my life pretty much always went according to plan: that is, until they didn’t. On a gorgeous summer day in the year 2000, I traveled with my four-month-old baby from my beautiful home in Chicago to my childhood home of Philly and heard a world-renowned specialist say to me, “Your son is blind.”
My son was the first blind person I had ever met.
In my first book, Thriving Blind: Stories of Real People Succeeding Without Sight, I describe the first encounters I had with two families of blind teens shortly after my son, Michael, was diagnosed. One family was catering to their child who was completely dependent on them and barking orders at them. The other teen was arguing with his mother about wanting to skateboard in a hotel
The boy seemed like a typical teen. I wasn’t interested in how he was able to skateboard without sight. I wasn’t concerned about what else he enjoyed. My concern, I wanted to know more about the fact that their issue had nothing to do with blindness. Blindness wasn’t mentioned at all. I thought, “How could that be?”
At that point in my life, every second of every hour of every day I was consumed by the fact that my baby could not see. He couldn’t see my smile. My son couldn’t see his toys. He was blind. That’s all I thought about. My son was blind. Sigh. Cry. Repeat.
While I didn’t know a thing about raising a blind child, I decided that day that I wanted the kind of life in which I would debate skateboarding etiquette with my son, not whether I served him the correct juice or not! I made the choice at that moment to get myself as close as possible to people that I wanted to be like and I wanted my son to be like—moms, dads, and kids that were not just surviving blindness, but thriving. I wanted to know what they knew, do what they did.
– From Thriving Blind
Changing my Mindset
Deciding to help my son thrive left me frozen with fear. I didn’t know how to help him succeed without sight. Back then, without Meetup, Facebook, or ways to connect with similar families, I spent years in tears and anger.
Then one day I realized that while I had dreamt and planned to be the World’s #1 Mom, I was acting like the worst mom for my son. I was so busy cursing the fact that my hopes and dreams for him were shattered that I completely neglected to realize that he was his own little person, with his own gifts and talents and purpose. Blindness was not a barrier to my son. He was (and still is) doing everything he wanted to do, albeit a little differently than the rest of us sometimes. It was my perception of blindness that was holding him back. So, I chose to see blindness differently and get moving on getting him what he needed to thrive.
Taking Action
I took action: I scoured a new thing called “the internet” to find role models and other families like mine. It took me over a decade to build an arsenal of resources and to connect with other parents like me and children like mine. Along the way I had a second son who was diagnosed with the same blindness as my firstborn. The results of that dedication, grit, and persistence are extraordinary! My boys are not surviving their blindness – they are thriving Michael and Mitchell have far exceeded every expectation, low and high, that everyone in our life had for them. I am proud to say that I stopped crying on my couch over the life I thought they were supposed to have and started working to help them navigate a life they could have. I have been cheering for them ever since!
I am so blessed that my dreams for my boys were shattered by blindness because I could have never dreamt they’d do the things they have done or have the plans for the future that they have.
“It takes a village to raise a child,” they say. For families like ours, it takes a diverse community. After countless sleepless nights searching for connections, I didn’t want other parents to struggle. So, I started the Thriving Blind Community on Facebook. It’s a space for families to ask questions, find information, and read inspiring real-life stories. I also discovered Family Connect, a valuable resource for parents of blind children. Now, I’m collaborating with them to develop resources for families like mine. These communities are what I wish I had known about when my sons were diagnosed with blindness.
Each Child Deserves to Thrive
Every child is unique. Every blind child is doubly special. There are parts of my journey that have been scary and frustrating, I’m sure you can say the same. You but you don’t have to walk the path by alone. Families who’ve overcome challenges and nurtured resilience in their children teach us a lot. The Thriving Blind Community on Facebook and the Family Connect website offer many resources. They help answer your “how do I…?” questions about raising a blind child.
With the right support, encouragement, and belief, your child will survive, too. In fact, as Kristin so poignantly describes, “They’ll do better than survive. They will thrive.”
– Erik Weihenmayer in the foreword to Thriving Blind: Stories of Real People Succeeding Without Sight Thriving Blind: Stories of Real People Succeeding Without Sight
Learn more about Thriving Blind – Thriving Blind Community on this webinar: