Kasey Carmona | 6 Days of Dying and a Masterpiece of Life

Warning: This episode contains a mother's account of her son, CJ's, final days of life. This may be difficult for some listeners to hear, particularly those who have lost a child.

99 Days. How much life can you squeeze out of 99 precious newborn days? Especially when 84 of those are spent in the hospital?

Kabuki, a major theatrical form in Japan for four centuries, became less of a theatrical experience and more of a grieving one.

Kabuki Syndrome (a rare genetic syndrome), named in part after facial art depicted in Kabuki theatre, expresses itself with distinct facial features including large eyes and long lashes.

CJ would not only fight to stay alive with Kabuki, but due to Kabuki, he was also born with half a heart (hypoplastic left heart syndrome), 3 kidneys, and a cleft palate. The odds were stacked against CJ and his family.

Kasey and her husband did whatever they could for their son. However, when it became clear that they were going to have to have procedures done to CJ, that was their sign that they weren't honoring CJ's spirit or his life. They came to accept the truth of their son's young life and decided to take him home with oxygen support only.

Kasey could have never anticipated that the day they took CJ home on hospice care would be the first day he would truly be living. For six days, they loved as they had never loved. And, they found peace in their sorrow; believing that the gift of CJ's life was to highlight the abundance in the present moment.

We often torture ourselves with questions we will never know the answer to. And, with odds of .032% of this diagnosis, "Why?" is a question with no answer. Scientifically, it comes down to one tiny missing gene. In the contrast, we can recognize the fragility of life and its magnificence, too.

"Part of living the abundance of life is experiencing loss."
- Kasey Carmona in a Valentine's letter to CJ

RESOURCES:

• Kabuki Syndrome
• Hypoplastic Left Heart Syndrome
• Book,