Quality of Life

Years ago my obstetrician called me at home to educate me on the laboratory results of a blood test he’d ordered earlier.
“At your age, your chances of having a baby with severe genetic defects are one in twenty-two,” the doctor said. “After the blood test, your chances are one in two. You have a fifty-fifty chance of having a child with serious problems. Do you still want to continue this pregnancy?”
“Of course,” I answered.
“I can order an amniocentesis to confirm,” he offered.
“No,” I answered. “The results won’t change my choice to have this child.”
“Well, it’s your decision,” the doctor answered. “But remember this choice will negatively affect the quality of life not just for you - but your whole family.”
After I hung up, I felt stunned, unsure how to feel. So I cried. My two-year-old saw my tears and asked me why. It was difficult to find words to explain.
“The baby inside Mommy might be different, I finally answered.
“What’s different?” he asked.
“Different means the baby might not be the same as you and me.”
“Different isn’t sad Mommy,” my young son said.
He was right. I stopped crying.
When I told my husband about the doctor’s report he said, “What ever shape our baby’s in, she’ll still be our little girl and we’ll love her and take good care of her.”
I had a friend who decided to be sterilized after her second child. Why?
“I have two healthy children, so why should I take the chance of having one with problems?” she told me. “I just don’t want to take that chance again.”
My daughter Alisa was born a few months after my doctor’s phone call . . . perfectly healthy. Will she have challenges during her life time? Yes - we all do.
My grandson Caleb was in the ICU of a local hospital with RSV for a month. Because Caleb was born without a brain and requires constant care day and night, the doctors kept urging my daughter April to consider Caleb’s quality of life and her own and to reconsider her decision to actively pursue urgent care.
“They have not been able to grasp what a privilege Caleb is and how immensely he is loved and adored,” April said after one long tiring day in the hospital. “Today I met with several doctors and told them our family story. When I finished, they were all in tears. I explained how Caleb is surrounded by love and how our family’s quality of life has been richly blessed by his presence. The resident doctor came up to me later and said, ‘Thank you for reminding me what quality of life really is.’ The respiratory therapist has also been a skeptic. Today we replaced Caleb’s mask with a nasal devise while I prepared to hold him. When they took off the mask, Caleb’s whole face lit up in a big smile when I said, ‘Hello my sunshine boy!’ Then I just smothered him with kisses all over. Caleb couldn’t stop smiling. When I glanced at the therapist, he had tears in his eyes. I held Caleb for almost two hours and he never stopped smiling.”
Every parent takes a life-altering chance each time they conceive a child; but the chance is not between having a “normal” child and one with “problems”. Every child will have challenges - be they physical, emotional, social, mental or spiritual. Each parent is given the soul altering privilege to learn the true meaning of devotion in the midst of those challenges. That deeply personal choice is what creates quality of life. The chance is really a choice - to love - whatever the chances.

No comments: