From the Incubator to the Crib: When Joy Turns to Heart-Wrenching Sorrow and Sorrow Gives Way to Acceptance

Raising a child with disabilities requires patience, compassion, understanding. The difficult circumstances made my wife and I question having other children. Still, when my wife got pregnant unexpectedly, we saw it as a blessing and a joyful surprise. Even more joyful was later news that everything with the pregnancy was proceeding normally.

A normal pregnancy is a term doctors use, as opposed to an abnormal pregnancy. This time, all it took for me to fall in love with our child, was an ultrasound picture taken at about six months, showing our child’s beautiful face and cute, little fingers. Until that picture, I had doubts about whether this really would be a normal pregnancy for my wife and our child. I wished it to be, but that doesn’t make it so.

I could tell my wife was just as relieved as I was and we seemed to be in the home stretch, until everything went terribly wrong. My wife was rushed to the hospital in preterm labor. The doctors did what they could and gave her medication to try to stop the labor.

It was a tense 24 hours, with lots of pacing and hair pulling, but my wife and child made it through and the preterm labor was halted. My wife was sent home from the hospital and ordered to stay in bed for the next few weeks.

Bed rest isn’t something we were unfamiliar with. My wife was prescribed bed rest several times during her previous pregnancy.

Bed rest worked until it didn’t and my wife was rushed to the hospital about a week later. This time, the doctors were unable to stop her preterm labor. My wife gave birth in a hospital room swarming with doctors and specialists.

At barely 32-weeks in utero, our child, who we later named Jasmine, was born way too early. Jasmine was tiny and blue, and she wasn’t breathing. She was handed off immediately to a neonatal specialist who tried desperately to clear her lungs and get her to breathe.

I cried, and I’ll admit to crying to whoever asks, when she finally breathed. But I never got to hold baby girl Jasmine that day and neither did my wife.

My wife and new daughter spent several days in the hospital together. At barely 4 pounds, Jasmine was in the neonatal care unit, inside an incubator, and my wife was in a hospital recovery room.

When my wife was finally discharged from the hospital, I’ve never seen anyone look sadder than she did when she had to leave baby girl Jasmine behind.

Day after day, week after week, we visited our baby girl in the hospital, watched her in the incubator. My wife would stay all day and often into the evening.

Several weeks passed before we could actually hold baby girl Jasmine. Eight weeks would pass before we could finally bring her home. Those days and nights were an agony, but nothing compared to the heart-wrenching moments when Jasmine wasn’t breathing.

Until next time

Robert Stanek

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