Like any couple trying for a baby, Erika and Stephen Jones were giddy with happiness to fall pregnant. But then, heartbreak. First, the 18 week ultrasound showed their longed-for daughter had Down syndrome. Soon after they learned their tiny baby had a rare tumour on the brain that would likely kill her soon after birth.
Now the broken-hearted couple are determined to enjoy every minute with their “perfect, wonderful little girl”, sharing these beautiful family photos to inspire others to treasure the moment and embrace differences.
Baby Abigail Noelle is not expected to have long to live, but the couple want to share the story of their second precious daughter with the world. With shattered hearts, they posed for a series of beautiful photos with Abigail and big sister Audrey to “give her life purpose” and that will become treasured keepsakes of a child born with special needs.
“We have smothered this little one with love and kisses and will continue to do so every moment we get,” Erika writes in a blog post for 8.08 Photography. “This situation is tragic and unbelievably difficult. It feels like we are living someone else’s life, some other family that you read about on the news.
“We don’t want to lose our daughter. We want to see her laugh, dance, fight with her sister, ride a bike, go to school… we want to see her life. But most likely, her whole life will be weeks or months, not years. Our hearts are broken and ache for the time that we don’t have.”
Erika says coming to grips with the news their child would have Down syndrome was the easy part, it’s the cancer prognosis that is too much to take. “Our minds weighted with questions and fear of the unknown to come,” Erika says.
The Florida family was not expecting to have much time with Abigail after she was born, but she has proven to be a fighter. “Our hearts leapt with joy when a beautiful pink baby girl came out screaming (and pooping). She is moving, nursing, squawking, sticking out her tongue, opening her eyes, holding our fingers, and doing all things a baby does. She has blown us away and surpassed every expectation.”
A MRI after the August 6 birth confirmed that nothing can be done to treat the tumor. The neurosurgeon recommended that the family take Abigail home and “cover her with love”. “So we did and pediatric hospice will help us navigate the journey to come.”
Stephen says he has no qualms about sharing their story because he is certain his daughter will make a big impact and show love to the world. “God has a plan for her and is using her to touch people’s lives,” he says.