I was 25, fit, healthy and thrilled with uttermost joy that in 3 months I would have my second child. Little did I know what lay before me. It started just before the birth when my husband decided that he didn’t want to cancel his yearly conference he attended. Off he went, his parents arrived to take care of my 3 year old daughter and I went to the hospital alone. I saw the Doctor struggle with the baby during delivery, was too tired to ask questions, just happy to hold the tiny little girl and see that she was okay. When I saw ‘Grandpa’ later that evening I was told that ‘Granny’ had a heart attack and had open heart surgery during the day. My poor, sweet little Lianro looked at him with her big brown eyes and asked “You’re not going t leave me too are you”?
The weeks slipped into months and I moved through each day in a fog of exhaustion as I fed this little baby every 2 hours night and day, while I tried to keep up with the rest of life. She didn’t reach the milestones babies do, was quiet and small, so off I went to the Pediatrician. He said all was good, she’s just a slow developer. Friends came to visit and encouraged me to take her for another opinion, which I duly did. I was sent to a school for the Cerebral Paulsy to see a Physical Therapist. And so the journey began of coming to terms with the fact that my child was physically challenged.
Six years later visiting a Doctor friend in the USA he urged us to visit a Geneticist. We did so and within two minutes in his office he said, “Cornelia de Lange Syndrome”. He explained what it was and how rare it was in South Africa and connected us with the Foundation in America. I still to this day remember how I felt when we left his office. As I stepped off the pavement it felt as if I had entered a vast, black space. I was numb. The world was cold and deathly quiet.
The months and years that followed seemed like a whirlwind. My husband didn’t like me to speak about it to anyone and it became an internal journey of confusion and complexities. People around me glared and didn’t understand why I couldn’t control Candi’s behaviors. Her therapists would reprimand me for not working hard enough with her. My Mom couldn’t handle her and time spent together became less and less. I didn’t find a support group and for years I just soldiered on quietly.
Believing to my core that each day in life counts, I purposed to laugh and find joy. I would take my eldest daughter Lianro to tea, oh how we loved to go out together. I focused on her young life – ballet lessons, swimming, sleep-overs. There were girls everywhere.
I invested some time in study and research about healthy living and further plunged the family into eating a super healthy diet. I started running and found my quiet and peace in those moments.
I dreamed of traveling to Europe, having close girlfriends, writing a book, speaking and teaching, having my own business and making a difference in the world. Each dream manifested over the years that followed and I found moments and spaces of happiness.
Much of my time was given to our church and I worked with much joy and energy with the teens and women. I started a food sharing with the children of the inner city. My Spirituality was my anchor. I remember a day when my energy, joy, courage and strength was depleted. It felt as if I was about to snap and lose my mind. I ran to my room, shut the door and fell on my knees. With eyes dry, I sobbed before God from a deep, hollow space inside. All I could say was “Help me. Help me”. I have no idea how long I anguished there, could have been a minute or an hour. I do know that a great calm filled me, I got up with a spring in my step, strength, courage and a smile on my face. Nothing around me had changed, but I had.
Looking back over those years, it was as if the fog of the black space I stepped into the day I found out that Candi was mentally challenged shrouded me. The skills of having dreams, living a healthy and balanced lifestyle and giving saw me through abundantly. I never resorted to using alcohol, drugs or tablets to get by.
I never complained either – kept my spirits and all those around me strong and happy. I did not however balance that out with taking stock of what didn’t work for me, facing the challenges for change and taking action. I also didn’t understand the value of taking care of me, for affirming myself and knowing my needs better. This eventually impacted my life and all those I love.
My life’s journey has been so enriched by each challenge and I am thankful that I chose to grow out of each situation. I know that Candi with her unrelenting ways has facilitated aspects of this. With joy and thankfulness I head out this week to do a book signing at the Georgia School Board Association’s Summer Conference. What a joy to share the Big Things in life she has taught me. What an honor for me to share with you, the 5 Life Changing Challenges that have empowered my life.