I had the absolute privilege of photographing this incredible family a couple of days after they came home from the hospital with their sweet Abigail. Take a few minutes and ready their story as told by Erik AKA Mom : )
At 12:37am Wednesday, August 6th, we were blessed to have our second daughter, Abigail Noelle Jones, join our family. 8lbs 11oz, 21in with a full head of hair. She is our perfect, wonderful little girl. We want to share her story so far with you. At our 18 week ultrasound, we were told that Abigail showed multiple markers for Down syndrome and then the follow up blood test was also positive. Initially, we were shocked and scared, mourning the loss of a “normal” baby. But God quickly worked on our hearts and His peace surpassed our fear. We were soon excited and honored to have a child with special needs. Then, at our 30 week ultrasound, our Dr. discovered that a mass had developed in the left hemisphere of Abigail’s brain. A fetal MRI revealed the mass was a rare tumor, most likely a type of cancerous teratoma, that was replacing her brain tissue and destroying normal brain anatomy. Our hearts were broken and our minds weighted with questions and fear of the unknown to come. Additional ultrasounds over the following weeks showed significant growth and our appointments with neurosurgery and other specialists determined that the prognosis was bleak. Her head grew to a size that made a vaginal birth to risky and a C-section was scheduled. Leaning on the grace and perfection of our God, we knew little Abby’s life had a purpose, no matter how long or short it was. We pray continually for her healing but our faith in God was/is not based on Abigail’s healing. God is not a god that responds to our plans and how we want things to work out. Our faith is in the loving Father that His plans are bigger than ours and those plans will bring people to eternity. Sometimes the things He needs to bring others to eternity may cause us to walk through tremendous pain but we need to focus joy of the eternal and not the pain of the temporal. Our c section was scheduled for August 12th, but once again, Abigail had her own agenda and Erika went into labor the evening of August 5th and she delivered via c section shortly after midnight on August 6th. Our expectation was that we wouldn’t have much time with Abigail after she was born, but 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. God has blessed us with countless precious moments that we did not think we would have. A MRI done after birth confirmed that nothing can be done to treat the tumor, it is too invasive and aggressive. The neurosurgeon is certain it is one of 3 types of tumors, all cancerous. Treatment with chemo would likely kill a baby this young, and surgery is futile since they cannot remove it all and it would likely grow back quickly. The neurosurgeon recommended that we take Abigail home and cover her with love. So we did and pediatric hospice will help us navigate the journey to come. We have smothered this little one with love and kisses and will continue to do so every moment we get. 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. We stand on this – our God is good. He was good before we knew what a fetal brain tumor was and He is good now. He has shown up and will continue to show up. He will keep us standing and moving forward. He will carry us when we cannot walk another step. He will bring joy through sorrow. He will heal Abigail, in our arms on this earth or the moment she breaths her last breath and is embraced by her Heavenly Father. His promises are true and we rest in Him.