Written by Malinda Just Tuesday, 20 September 2011 16:01
A year ago, Sept. 27, 2010, shortly after 11 a.m., I found myself sitting alone in a bathroom stall at KU Medical Center. With joyful tears, I silently praised the Author of Life for giving me another day with my then 2-year-old daughter. At that moment, “another day” was not assumed, but viewed as a very precious gift.
Roll back to the year before. My daughter, Gracelyn, had just turned 1. I was a new mom taking my child to a routine well- check at our pediatrician. Gracelyn had blood drawn just like any other 1-year-old. And just like any other 1-year-old, I expected normal results.
Instead, our pediatrician took the time out of his busy day to call me with results. That’s never a good sign. Gracelyn has “dangerously low” hemoglobin, he said. Could lead to “congestive heart failure,” he said. “Head to the hospital in Wichita,” he said.
So ended my expectation of normal.
The first hospital stay was grueling. Imagine days of blood work with a 1-year-old. A sweet little girl who had no idea the needles were for the greater good.
After tears from Gracelyn, Mommy and Daddy, even grandparents, as well as a blood transfusion, we were sent home without a diagnosis.
Enter months of lab work. Checking and rechecking hemoglobin levels. Monitoring every little change. Getting to be on a first-name basis with nurses and the lab tech. Traveling to multiple cities for specialist appointments. Specialists baffled.
Finally, a few months before Gracelyn turned 2 (and a few months before daughter Jemma entered the world), our family was connected with a hematologist at KU Medical Center—Dr. Jakica Tancabelic.
After our first visit, Dr. T had a couple suspicions. Finally it seemed we were getting somewhere, though the potential prognoses weren’t pleasant. Genetic disorder or cancer. Either way, it seemed, the road was getting bumpier.
In May 2010, two days after Jemma was born, we were back in the hospital for Gracelyn’s second blood transfusion of her short life. And then we waited six weeks for the transfused blood to be replaced by real blood so we could continue with diagnosis.
And then July came. So did a diagnosis. No cancer. Instead, Hereditary Spherocytosis. Gracelyn’s spleen was killing off her spherical red blood cells. Where a normal person’s red blood cells circulated the body 120 days, Gracelyn’s were being extinguished in 21 to 28 days. Though her body was producing cells like crazy, it couldn’t keep up.
Our doctor recommended surgery to remove Gracelyn’s spleen. A procedure usually reserved for people 5 and older, the severity of Gracelyn’s case warranted action. Though it was difficult—particularly to sign waiver forms with the word “death” included—we knew surgery was needed.
So began weeks of raw emotion. Fear of the unknown. Suffocating trepidation over the possibility of death. Bitterness over a surgery delay due to a cold. And finally, peace…maybe even excitement…over the possibility of renewed health for Gracelyn.
I was ready for my little girl to feel better. (She does!) For her to be able to run more than 10 feet without saying, “Mommy, I’m tired.” (She can. In fact, she’s gotten pretty fast!)
I was ready for her to have rosy cheeks for the first time since she was 4 months old. (She’s absolutely beautiful!)
I lwas ready to see her little body gain weight and inches. (She has—at her 3-year check in April, she had gained more than 3 pounds and grown 3 inches. For us, that is a huge improvement!)
And I was ready to see what God had in store for us post-surgery.
And what did God have in store? Not just “another day,” but another blessed year with not just one, but two beautiful daughters. For that, I am forever thankful.