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!

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Child Loss

Woman holding baby

This Mother Turned Her Painful Experience Into a Way to Help Grieving Families

When Cheryl Haggard’s newborn son, Maddux, was 6 days old, his parents had to make the difficult decision to take him off life support. Maddux was born with myotubular myopathy. Haggard and her husband, Mike, choose to have their few remaining moments with their son captured by a photographer named Sandy Puc’, who took photos of [...]

Father Shares Beautiful Beatles Moment With Dying Infant Son

This is heartbreaking and beautiful. In the video below, Chris Picco sings The Beatles’ “Blackbird” to his dying son, Lennon James Picco, during what turned out to be some of the last hours of the infant’s short life, according to The Ashley Picco Memorial YouCaring page. On November 8, Lennon was delivered by emergency C-section at [...]

To Anyone Who's Lost a Child, This Is for You

Backstory: On a May evening a few years ago, I sat down at my computer and saw a sad post from an online friend whose son had been very ill from the moment he was born. He had several genetic disorders including one my son has, Idic15. Before her son was born she was told [...]

Witness the Magical Moment This 7-Week-Old Child Hears for the First Time

Watch wonder and astonishment cross this child’s face as he hears the loving voices of his parents for the first time. Lachlan, who was 7 weeks old at the time the video below was taken, was diagnosed with moderate-to-severe hearing loss in both ears, according to the YouTube description. When he gets his first hearing aids [...]