The old saying goes, “When doctors say ‘no,’ Jesus can still say ‘yes.’” That’s what Jaclyn came to realize when doctors handed her baby a terminal diagnosis. But this little miracle baby is still fighting years later.
The story of Jaclyn, Brandon, and their baby girl, Emma, began on March 20, 2015. Jaclyn's youngest child, Emma, was born after a planned cesarean section. The procedure went well, just like her pregnancy had. All seemed normal, and the couple looked forward to all the typical things parents look forward to with their children, including watching siblings become each other’s best friend and play together.
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Four-year-old big sister, Ava, was excited to have baby sister Emma coming home soon. She was dreaming of all the things they would do together including one day dancing together on a stage!
In a few days, mother and daughter were discharged from the hospital and resting at home. In the comfort of their home is when Jaclyn noticed something was troubling her daughter.
She woke up with Emma and noticed her daughter’s body shaking, eyes twitching, lips smacking, and voice screaming. This was clearly abnormal, but Jaclyn had no idea what was happening. She woke up her husband Brandon to help every time this occurred.
“Something is wrong, I just know it,” Jaclyn said.
Emma’s strange behavior continued, so Jaclyn and her husband planned a visit to the pediatrician. They recorded videos of Emma’s behavior, suspecting their child was having seizures. Their suspicions were confirmed by the pediatrician who informed them to go to the emergency room of a nearby children’s hospital. By the time they arrived, Emma had already had 10 seizures.
Emma’s struggle only continued as workers readied Emma for the tests they would be conducting. Jaclyn's baby girl continued to have seizures, between 25 and 30 by the end of the night. The next day, the tests were all coming up negative. This was not only frustrating to Jaclyn but unreal. Something was clearly wrong with her child. Emma was given medication, which seemed to only make Emma sleepy and cause her to stop eating. That’s when they switched to a feeding tube.
Eventually, Emma underwent an MRI and then doctors finally made a discovery. That’s when they shared the news no parent ever wants to hear. “The doctors walked in and asked the family to leave the room. That’s when we were told our sweet baby, who was only 5 days old, had a terminal diagnosis.” And what’s worse, they were told there is no cure.
[caption id="attachment_167427" width="600"]Emma was diagnosed with Lissencephaly, a brain disorder that affects 1 out of 100,000 children at birth. Emma’s brain is smooth, without the grooves of a normal human brain. Doctors shared that she would be severely challenged in her mental development. “A vegetable, yes, they said vegetable.”
“‘How will we tell her sister?’ I held her limp body, kissing her and praying she’d breathe again,’” Jaclyn shared.
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The doctors could make no concrete predictions about Emma’s future, leaving Jaclyn and her husband to speculate, and think about all of the things in Emma’s life she may never get to experience.
“I sat there and mourned what I thought her life would be, what our life would be like as a family, what her relationship would be with her sister, and all the things she would never get to do,” Jaclyn shared.
But when she was at her very lowest, Jaclyn got a call from another doctor, Ava’s pediatrician who wanted to reach out to reassure the family. "I am not familiar with this diagnosis but we will get through this together. I will treat Emma for Emma and not her diagnosis. She will write her own story. No doctor can tell you what she will and won’t do." That was the encouragement Jaclyn and Brandon needed.
Today, five years later, Emma is continuing to surprise them by doing things she wasn’t "supposed" to ever be able to do. She smiles. And laughs. And will start kindergarten!
One day, she even took the stage for a dance performance with big sister Ava.
Wanting to protect Ava from disappointment, Jaclyn gently prepared Ava in case Emma had a seizure on stage. And Ava’s response was perfect. "It’s okay, Mom. I would just stop and care for her. Then when she is okay, I will finish dancing."
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God clearly knew what he was doing when he gave Emma this caring and dedicated family. Ava was meant to be Emma’s big sister. And Emma was meant to thrive.
h/t: Love What Matters
Featured Image Credit: Facebook/Embrace Life Emma
Get in touch with him at aarondanthony.com and check out his debut short story anthology Honey Dreams on Amazon and Barnes and Noble.