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Turning Sorrow into Peace, Love and Inspiration
Carole M. Amber
Devastation, sorrow, anger, uncertainty…there are never enough words to describe the loss of a young child, your first born.
Can you imagine bringing a gorgeous, healthy baby into the world and then having the breath knocked out of you when you learn that your first born child has a rare disease and has a few months left to live?
The answer is, you can’t. No one can ever imagine such an experience, but that is exactly what Carole and Troy had to endure. Suddenly their lives had been broken into a million pieces.
They were first-time parents beaming with joy and pride as they returned home from the hospital with their son TJ. As any parent would, they began planning their lives with their brand new addition to the family.
In what seemed like the blink of an eye, their joy and happiness turned into sorrow and heartbreak when they discovered that their child had a rare disease called Leigh Syndrome, a neurometabolic condition that causes energy to not transfer properly throughout the body.
They began the process of obtaining multiple tests to determine how to best proceed.
“We also got a second opinion and within 20 minutes of getting that second opinion, we learned more than we had within the four months of testing at other places, and I believe it was because we went to a specialist who was very familiar with the condition,” Carole says.
He looked at us and said, “Your baby probably will not see his second birthday.” We knew something was wrong and it was progressing, but to what extent, we had no clue.
“Was he going to be blind or in a wheelchair, or will he live to 14 or even 40? We had no idea of the severity of the condition before speaking with the specialist. We learned within that two-week period that we had to make decisions about end of life. I felt like a Mack truck hit me, and my husband and I were in a whirlwind,” Carole said.
In life we experience all types of heartache, devastation and pain, some more challenging than others, but we have the ability to turn those challenges into triumphs. We have the power to turn those devastating life experiences into opportunities, knowledge, and positive experiences for others.
Knowing that their son TJ, wouldn’t live past his second birthday brought Carole and Troy closer together as they planned to say goodbye to their only child.
From this experience, they have turned their sorrows into peace and love for their family and inspiration for others.
Carole is sharing her message about her experience and helping thousands of parents and kids cope with similar mitochondrial diseases through her book, The Gift of the Lady Bug.
“The kids say that it gives them permission to be sick, or to be different, or have special needs. It gives them permission to be exactly who they are, which is going to be different from everybody else in the world,” explained Carole.