FamilyConnect

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. 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. He 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 

After I made the decision to guide my son to thrive, I was still paralyzed in fear of how to do that. I had no idea where to turn to help my son succeed without sight, to do all the things that I had hoped he would do. With no Meetup app, or Facebook, or ways to connect with other families like mine back then; I cried my eyelashes off for years and shook my fists at Heaven daily. 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. 

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. 

I could never, ever have done this on my own. They say it takes a village to raise a child, but it takes a community of many different folks to support families with kiddos as special as ours. I spent thousands of sleepless nights searching for people to connect with on my journey. I didn’t want any other parent to have to do that so I created the Thriving Blind Community on Facebook as a place for families to turn to with questions, get information, and read real life stories to inspire them to keep thriving. In addition, I’ve connected with an extraordinary resource for parents raising blind children called Family Connect. I see it as such an important resource for families that I am working with the Family Connect team to create resources for families like mine need. Both of these communities are the places I wish someone had directed to when my sons were diagnosed with blindness.  

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 have been through the struggles and found ways to foster resilience and independence in their children are some of our best teachers. The Thriving Blind Community on Facebook and Family Connect website are filled with resources and stories to answer many your questions about “how do I…?” as you navigate this amazing journey of 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: