My Journey with Emma: A Memoir of Healing, Hope, and Truth


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My soul began to sink into a primal dark abyss of fear inside of me. Waves of nausea swept over me as the front door closed with a resounding thud. The house had grown silent, but as I turned away from the door my thoughts began exploding like fireworks.

“How can it already be time for this? We haven’t had her long enough! This isn’t really happening!” 

Each thought felt like tiny shreds of glass piercing through my skin. Truth swelled my heart with a bitter, stinging pain. My mind was crazy with reality as my body filled with overwhelming emotion.

My façade of smiles and ease masked an internal fear, which now threatened to overtake my grip on saneness. Not many knew about my severe panic attacks. Now, my body began to hyperventilate as I gasped for air, and tried to stop wild panic from consuming my mind. Heaving sobs came, but I stifled them trying not to wake the two children who were napping just a few feet from me.

Truth was ripping apart the illusion, crashing into my world, and I had to face it head on. It would be a struggle to keep myself, my marriage, my family, and my friendships intact. I always had faith God existed, but now I had to begin relinquishing control, and finding strength in Him.

This is my journey from my daughter Emma’s birth, to her diagnosis with Cockayne Syndrome, to her decline, and my final release of her into the arms of Jesus.

Emma taught me so much. I don’t think it is possible for me to share the depth of value she brought into my life. My Journey with Emma and our non-profit Circle of Hope is Emma’s legacy. May her life and our journey together bring hope and comfort to others.

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