The Realization I Had the Moment My First Son Died


The moment that changed the way I thought about disability and disease was when my first son died.

Porter had many struggles in his short 7 years on earth. He was born with a rare chromosomal abnormality, which came with low vision and heart problems. Porter had open heart surgery at age 2 and then need another procedure at age 7.

I spent much of Porter’s 7 years trying to fix things for him and trying to make things easier. We attended many therapy sessions after school. When Porter was 6, his brother, Emerson, was born. I have very few photos of both my boys together.


Emerson was also born with the same chromosomal abnormality Porter had. Luckily, Emerson had full vision and a healthy heart. He does experience many of the developmental delays and is nonverbal like his brother, Porter.

I only had both my boys together for five short months. We lost Porter on February 24, 2006 during a heart procedure. That was the moment that changed the way I thought about our sons’ disability. That was the moment I realized what was really important.

It did not matter how many therapies we attended or how many skills were achieved. That very moment, I realized that “now” is really all we can count on. The “present” is where we should live and be thankful for every single moment we are given here with our beautiful family.

It’s not always easy to do, and there are some days when the present moment is difficult or unhappy. We now spend more time playing and outside than we do at therapy. I have come to realize the real gift that I have been given.

There is no need to fix things for my son. He’s just fine!

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