When our much loved eldest son was born, we had a very previous ten hours of getting to know him without the knowledge of what was to come. I will always treasure those hours and am eternally grateful for them.
I had 30 minutes after being told he had a serious heart condition before my husband returned to see us. I have always looked back on those minutes as the time I grew up. I knew I had a choice to make. I could fall apart and lose everything or I could hold it together and protect my little family and give my new son all the love we had. I believed that if he felt our love, that he might want to stay with us.
As a young girl, I had loved the story of Pollyanna by Eleanor H Porter. I loved the way she played the Glad Game and how she found joy from sorrow and hardship. This became my coping mechanism and to this day when life throws sorrow, grief or everyday curve balls at us, my first thought is to find the positive. I just can't see the point of wallowing in self despair and dragging everyone around me into my misery. Of course I have my moments of tears and frustration but I work that out later in my own time and in my own way.
When our son was very little & very sick, I felt the need to record every moment. During our many visits to hospital, I had plenty of time to keep my mind occupied as he slept.
I am slowly sharing these words, experiences & thoughts as I feel able to do it. As soon as I start writing, I am back there, smelling every smell, hearing every word, feeling every emotion but also feeling the love that surrounded our much loved son.
This is shared with love & with the hope that other heart parents or those with their own special children will see that our dreams for our babies that no one seems to believe possible, really are. My way of coping was to create my own version of Pollyanna's Glad Game. It's how I coped & how I continue to cope whenever life throws me curve balls.
The treasured photo above is of Alan Kerr in 2015, with his wife Hazel, who fought to save baby James enjoying seeing how worthwhile his efforts were! Just look at the joy in all three faces! Alan commented that it is hugely rewarding to see the kids with complex heart conditions that they agonised over, living happy and purposeful lives.
In the words of Auntie Joan "Isn't it amazing what love can do."