Raising a Child with Disabilities: How Love, Compassion and Understanding Can Conquer Tragedy

After the birth of my son, Will, my wife had another difficult pregnancy. The medical recommendation was an abortion, or how the doctors put it: “A premature ending of the pregnancy using a surgical dilation and curettage.” That was the day my wife and I learned our child had genetic defects that could bring lifelong problems including congenital heart problems. That was the day my wife and I chose life instead of death and asked the doctors to stitch her uterus so she could try to carry our child to term.

NOTE: This post is a follow up to Tragedy, Hope and New Beginnings, which discusses the effects of toxins and poisons military members and their families are exposed to.

The doctors told us if we did this there would need to be more testing, other procedures, and that we likely would still lose our child. The doctors told us of a life of medical expenses, hospital visits, and likely more surgeries. My wife and I allowed the procedures that would ensure our child’s health but we never wanted to know the results of the tests. We never wanted to know the exact, devastating diagnosis.

Why? Because our child was more important to us than the devastating diagnosis or how such diagnosis could be used to help us “make the right” decision. The right decision to us was to have our child, as long as our child’s health and my wife’s health were not in danger.

Until that moment, I thought I’d lived through difficult days. As a child, I’d been hit by a car while riding my bike and dragged beneath it. I’d seen my step-father die in an explosion and soon after, my sister, Bridgette, from an undiagnosed brain injury suffered in the explosion. I’d been deployed to conflict zones and survived numerous combat and combat support missions.

But that moment—that day—was one of the most difficult of my life and it was followed by months of difficulty, with the pregnancy, with stress and worry. That year was also the first of many to follow where our medical expenses topped $30,000.

There were many more scares during the pregnancy and times when our child was almost lost to us, but six months later, my daughter was born. I took one look at her and named her Sapphire, because to me, she was as precious and wonderful as the gemstone which is her namesake.

The doctors saw only her devastating diagnosis as they whisked her away. I saw five fingers on each tiny hand, five toes on each tiny foot, beautiful brown eyes, and a cute button nose. I saw Sapphire, my daughter, who I loved instantly and unquestioningly.

 

 

 

 



 

 



 

Until next time,

 

Robert Stanek