Within hours after Jasmine was born, the doctor stood shoulder-to-shoulder with my husband at the edge of my bed. The conversation was heavy.
“Since Jasmine’s cousin had cystic fibrosis, she’s at risk for this genetic disorder” he said. “We will test her blood to be sure.”
“Oh, dear God, please…” I prayed aloud. “How long until we know?” I whispered. I felt the tears slipping down my cheeks, and reached out for my husband’s hand.
“It’ll take at least two to three weeks to get the results,” he said. “If the results are positive, we will do an additional test just to be sure.”
My husband squeezed my hand. “Honey, we have to be patient” he said. “I know it’s hard, but worrying won’t change anything.”
But, I had seen firsthand the ravages of this disease on my niece: sticky mucus plugging up her little lungs and wreaking havoc with her digestive system. Chronic infections. Constant shortness of breath. An early death. I had cradled her Mom in my arms on the days she’d plead to God and asked “Why?” And, I held her for a very long time at her daughter’s funeral.
In two weeks, the doctor called us to say the Newborn Screening test had been positive for cystic fibrosis. We were probably in denial, but we were not prepared for this; Jasmine was eating well and seemed to be healthy. With heavy hearts, we took her in for the second test.
When Jasmine was almost four weeks old, we took her back to the Doctor’s for a check-up and to find out the test results. “I am so sorry, but both tests showed that Jasmine has cystic fibrosis,” he said. “My nurse-practitioner will call to set up an appointment to discuss treatment options with you and to help you get the medical equipment you’ll need.”
My husband and I both cried. Right there, at that moment, we vowed to give the very best care we possibly could to our precious little girl.
I now stand next to my husband at the front of our church, facing so many loved and familiar faces, and take a deep breath. “We thank you for coming. Just over fifteen years ago, Jasmine was born,” I say. “She was an exceptional child. I know, I know.. You’d probably say ‘She was your daughter; so of course you’d think she was exceptional.’ As her Mom, I admired her tenacity; she never let her challenges get her down. She was always upbeat and believed she could do anything she set her mind to. Her father and I took great pride in her.”
As we return to our seats in the congregation, Mr. Thomas, her school principal, takes our place. “We all loved Jasmine. She breezed through each of our lives, and changed us, made us better people. I remember a visit from Mr. Smith, our music instructor, after Jasmine informed him she wanted to learn to play the clarinet and be in the marching band. I called her Mom and she said to let Jasmine try; it was her dream.” He cleared his throat and then continued : “And, when Mr. Brown, our athletic coach, came to see me because Jasmine had told him she wanted to be on the track and field team, and I called her Mom, and you know what she said: It was Jasmine’s dream.” Chuckles ripple through the congregation.
The principle returns to his seat and the Rev. Miller takes the podium. “Jasmine was a very special young lady. She had such a joy for life. She was active in our church’s youth group, dated one of the boys in the group, and wanted to bowl on their team. So, I called her Mom, and you guessed it: She said ‘Let her try, it’s her dream.’”
Then, a number of young people speak of how popular and admired Jasmine was. As one of them says, “Jasmine did not let her illness define who she was. She was a true champion.”
In Tribute to Jasmine
More information on cystic fibrosis may be found at Mayo Clinic.org. This site was helpful in my writing this fictionalized account of a young woman in our area that recently passed away from the prolonged effects of cystic fibrosis. According to her obituary, she bowled, was in the marching band, competed in track and field, and was pre-deceased by her cousin.