As I think back, I remember as a teenage girl asking God for a child who would love me unconditionally, because I wanted someone to love and someone to love me back.
I married at the age of 20 and a year later had a baby boy on September 4, 1980. He weighed eight pounds and four ounces; a big, beautiful and strong child ... I get to be this child's mom ... I was granted my wish, my own child to love and take care of. Delivery went well, but on the second day during recovery, our pediatrician told us that our son has a condition called infant jaundice, which was a yellow discoloration in my son's skin and eyes. Infant jaundice occurs because the baby's blood contains an excess of bilirubin, a yellow-colored pigment of red blood cells.
Credit Image: Chris Yarzab on Flickr
My son was placed under a fluorescent light in a warm enclosed bed to maintain constant temperature, which helps break down the bilirubin in the skin, for the remaining time he was in the hospital ... our pediatrician encouraged us not to worry, this will cure his jaundice and no other problems are present. That was my first real feeling of FEAR as a mother.
The first couple of years were simply lovely adjusting to motherhood; my son was a quiet child and appeared happy. Around the age of three years old, he cried more than normal, ran high fevers, and his arms and legs would swell up at random times ... what's wrong with my child? I felt terrified and anxiety builds and stays for years ... so I took him to Children's Mercy Hospital; full blood work is drawn, which led to a diagnosis of sickle cell disease. Sickle cell disease is an inherited disease that causes abnormal red blood cells, which causes sickle cell pain crises and other serious symptoms that often require hospitalization.
Our lives have changed ... How do I raise a child with a chronic illness to trust life, himself and his body? Who will help us? Will we live in poverty? How long will my son live?
We are given instructions on how to manage pain crises at home with prescribed pain medications, and we're given stats on life expectancy—death around early twenties ... Why me? Why us? I have to fight this illness and teach my son not to give UP! (This process teaches me faith.)
But some days I want to run and hide!
I remember my cousin dying at age 17 from complications of sickle cell disease ... I'm realizing that I'll witness my child suffer with chronic pain and other complications for the rest of his life ... I feel betrayed, disappointed and angry ... I don't want to be a mother now!
A licensed physician gives my three-year-old son his first morphine dose during an ER visit, and I, his mother, stood by, consenting and observing. I wasn't conscious that modern medicine was only treating the symptoms.
- From ages three to 17—My son has been hospitalized three to four times a year and prescribed a stream of opiate pain meds through IV and by mouth ... I'm numb, exhausted, scared, and just coping. (Sometimes while driving to the ER, I think of crashing the car and killing us both.)
- Age 17 to young adult—After years of taking the same narcotic pain meds, my son's body has built a tolerance—he's prescribed a stronger new opiate narcotic, "Oxycontin." This drug creates a dependence that is physically and psychologically very similar to heroin. I question now; is he in sickle cell pain crisis or just drug-seeking? (It's BOTH; he struggles with two diseases; addiction and sickle cell.)
I often think: Does the institution of medicine hold any responsibility?
My son obsessively hops around to hospitals looking for opiate medications to relieve his cravings and pain—he's over-medicating and starts purchasing his narcotics on the street.
... I want out of this nightmare! ... And, now I start practicing "tough love."
As a mom, I hoped to see my son play sports without getting sick, graduate from high school, maybe go to the prom ... NOT live most of his life in a hospital room pumped with narcotic drugs for dependence. I know how it feels to be in constant fear and worry, especially when the phone rings and I hear on the other end ..."This is Doctor (x) from hospital (y) and I'm calling about your son."
My son has overdosed on street heroin and methadone, putting him in the intensive care unit, he's mutilated his body, has been put on several suicide watches, has had multiple surgeries, has been hospitalized for acute pneumonia and sickle cell pain crises too many times to count over the years ....
But, he's still alive at the age of thirty-two.
Wow! How do I begin to acknowledge the divine plan for my life, witnessing my son suffer and love me ... My journey has been divinely guided; complete with heartache, tears, prayer and constant blessings from friends, family and my caring sister Carolyn ... I'm spiritually built for battle; because of my son's will and strength, and my courage "not to run"... I've learned to cherish each moment that I "get to" have with my son ...
God answered my request and gave me exactly what I asked for: a child to take care of who would love me unconditionally. I'm humbly grateful.
Debra Lynn Carter
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