There is hope for life after heartbreak. Mind Key’s New Jersey editor, Kelly Rockey, tells her personal story of turning heartbreaking news into a great story of love, friendship and fresh perspectives. When Kelly discovered her son was blind because of a genetic retinal disorder called Lebers Congenital Amaurosis (LCA), she found a support system of parents who had walked this road before. This support system soon became Kelly’s best friends, and lifeline during difficult times, instilling in her gratitude and appreciation for things that may initially seem like bad news.
We hope that these incredible stories of gratitude and growth during difficult times will help others see that there is hope for a better life after heartbreak.
By Kelly Rockey
The best Christmas gift
At the very end of 2004, I knew my life was about to change in a big way– I was having my first baby! I was due with a sweet baby boy on Christmas day. Two weeks before my due date, my water broke and my little boy was on his way. At the time, I was thrilled and incredibly grateful he decided to come early. I was so excited he would be here in time for Christmas, my very favorite holiday.
Yes, I knew life was about to change, but I had no idea how drastic that change would be. I certainly didn’t know all the people across the world my little boy would soon bring into my life, and how grateful I would be for it.
My beautiful boy came out screaming and was placed on my chest where he calmed immediately and snuggled into me. My heart filled with love and gratitude the second I saw him. When we brought him home from the hospital, I spent days listening to Christmas music and just staring at him. He was so perfect, like a little angel. I was amazed at my good luck having such a beautiful child during my favorite time of year, and I was so grateful that he was there for Christmas day! That year, we had the most magical Christmas ever– it was truly a holiday filled with complete peace and joy for our family.
An unexpected diagnosis
Fast forward a few months, and my world came crashing down. After weeks of speculation and slight concern over his lack of eye contact, we brought my sweet Christmas baby to a pediatric opthamologist.
After a short exam, he sighed as he turned to us and said, “I’m sorry but I think your baby is blind.”
I heard nothing else after that; my world ended right there in that doctors office. I can’t even describe how I felt. I was shocked and devastated, but most of all scared. I was terrified about his future, our future– I couldn’t imagine what it would be like. What hurdles would we have to face? How would we manage? And most of all, could I do this? Could I raise a blind child? The next months were filled with test after test on my infant, breaking my heart a little more each time I had to hold him down for a procedure. But, we made it through and it was confirmed he was blind due to a genetic retinal disorder called Lebers Congenital Amaurosis (LCA).
Finding the right support
After we got his diagnosis, we threw ourselves into therapies for him and online support groups for parents of blind children. I needed to learn all I could about raising a blind child and the best way for me to do that was to talk to other families who were doing it too. I imagine most parents find themselves in this spot after a heartbreaking diagnosis. Although still devastated over his diagnosis, suddenly, I didn’t feel so alone. There were lots of other families from all over the world who knew exactly how I was feeling. I was so grateful that they were only a mouse click away. In the beginning, I connected with a few other families who were dealing with a new diagnosis. We did a lot of crying together in those early days. I also connected with families of older children whose stories and pictures gave me such hope for my son’s future. Both types of families were so important to me in the beginning. I don’t know how I would have dealt with my new life as a special needs mom without them.
Discovering life after heartbreak
When my son was six years old, we attended our first conference for families raising blind children. It was there that I finally met so many of the families face-to-face who held me up during those early years. The feeling of finally hugging the people who were my lifeline for six years was incredible! We spent a long weekend staying up until the wee hours of the morning talking, laughing, and making memories. I felt like I was home. I felt like these people were my family, that they truly got me and my life more than anybody else in this world.
Over the years, we have continued to stay close and meet up when we can. As parents, we share joys and successes, as well as the heartaches and failures. We cheer each other on and support each other in this difficult job as parents of blind children from our computers and telephones. We exchange Christmas cards and send each other’s kids fun care packages during holidays. We support each other’s fundraisers and unite together as we fight for a cure. We truly are a family, one that would have never met if it wasn’t for the words “Lebers Congenital Amaurosis.” You see, in what I thought was the darkest moment of my life came one of the brightest lights in my life. Those lights are my fellow LCA parents.
As I reflect upon the past 12 years, I am so very grateful and realize how blessed I am to have this support system. These incredible friendships are all thanks to that sweet little boy who arrived right before Christmas.
To find out more about that Christmas baby and Lebers Congenital Amaurosis, please visit www.facebook.com/tyseyes.
If you are currently experiencing heartbreak– whether as the result of a diagnosis of LCA, or something completely different– know that there IS support for you, too. Reach out to danielle@mindKEY.me and let us help you find the right support you need to get through this difficult time. Maybe Mind Key is the community of support you’ve been seeking. Learn more about us and how we support health, wellness and happiness by signing up for our newsletter.