Maria Shriver

Losing a Child, Gaining Compassion

By Carl Guardino and Leslee Guardino

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"Your baby has multiple, severe abnormalities."

As parents, those six words changed our lives forever.

When we arrived at our doctor's office for our four-month ultrasound on January 31, 2008, we were brimming with the excitement and anticipation of all expectant parents as we wondered what the gender of our second child would be.

Dreams turned to devastation at the words we heard - but could not quite grasp or comprehend. This could not be happening.

We had prepared a room with a crib for our baby, wondering if the walls would be painted pink or blue. We had listened to the rhythmic sounds of his tiny heartbeat since he was the size of a thumbnail at week six.

We had endured the fright and fear of a near miscarriage at week five. We had leaped with joy when the over-the-counter pregnancy stick provided a positive sign.

Numb and nauseous, we huddled together feeling small and insignificant, helplessly unable to heal the life still living tenuously inside my wife Leslee.

Tears came, but could not cleanse the pain parents can feel when the fragile and delicate life entrusted to us is suddenly stripped away.

"Not viable." Horrifying words to describe something so precious and wondrous as the little baby appearing on the ultrasound screen in front of us. A week later, Leslee's water broke, and our little boy was lost forever.

"Multiple, severe intellectual and physical abnormalities" The crushing weight of those words will last a lifetime. But the lessons learned that day offered a clear and compelling choice.

We could grow bitter, or better. Even in inexplicable times, we are people of faith. We had read the Psalmist's words: "You knitted me inside my mother's womb."

But we still trust the Creator who somehow seemed to allow so many stitches to be sewn out of place. Even when our throats throbbed from the well of tears run dry, we knew our God is in control.

We know that sweet little life, broken but beautiful, was set free in a heaven that is a haven for babies, both born and unborn, to run and laugh and play.

Parents are not supposed to live longer than their children. But we trust and hope that our son, Emmanuel will greet us warmly one day.

Until that day, we hope to be a comfort to others who have suffered loss; like our loss, or in ways equally or even more tragic.

Our passion for our son can be translated to compassion for others who will never know the gift of parenthood, to those who have also lost a child, and to those blessed with children of special needs, who survived the womb and have a chance - with our help - to thrive amongst us.

Enter Best Buddies, an amazing association that links people with special needs in caring friendships with the able-bodied, provides opportunities for meaningful work and increasing levels of independence.

Our son suffered from a rare diagnosis called "Trisomy 18," yet intellectual and developmental disabilities can take many forms. I'm embarrassed to admit that before four years ago, I was one who would stand in varying degrees of discomfort when someone with a disability walked by.

Best Buddies has provided us with an opportunity to embrace the beauty in everyone, to honor and celebrate the memory of our son, and to support an organization that lovingly and successfully serves millions of incredible people, and their families, with special needs.

That is why, for the past four years, we have participated in the Best Buddies Hearst Castle Challenge, a charity bike ride from Carmel to Hearst Castle, raising funds and making friends to help others like our son.

It is why this weekend I am competing in the "CEO Endurance World Championships" in Tennessee's Smoky Mountains, a three-day, six-stage endurance competition against global executives, each of us competing for our favorite non-profit.

I'm racing for Best Buddies. More precisely, I'm racing for Emmanuel, and millions of children like him around the world.

I'm still not convinced that everything happens for a reason. But we can find reasons, and strength, to help others in our lives, our communities and around the globe.

In our faith tradition, we are urged to do so: "The Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the same comfort we ourselves have received from God."

Four months old should not be a lifetime. But for us, our unborn baby boy will always be an important part of our family.

Equally wonderful, our extended Best Buddies family has blessed us in ways unimaginable.

Grief may last a day, a month, a year. But the glory of helping others lasts a lifetime.

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Carl Guardino is CEO of the Silicon Valley Leadership Group, an association of nearly 400 of the top companies driving Silicon Valley and America's Innovation Economy. For the past five years, Guardino has served as one of nine Gubernatorial appointees on the CA Transportation Commission. He has successfully led or co-led nine regional and statewide campaigns for improvements in transportation, affordable housing and the environment. Carl is married to Leslee Guardino, the Founder of CanyonSnow Consulting. In their spare time, they compete in Marathons and Ironman-distance Triathlons, and Carl won the "CEO Challenge" at Ironman Canada in August of 2011. Carl and Leslee are the proud parents of two young daughters, Jessica and Siena.