I believe God uses our special kids to show us the beauty and kindness in the world around us. In a large way, this has been our story: nurses, doctors, and teachers who have gone the extra mile, neighbors, friends, family, and even strangers who go out of their way to surround a child with love and encouragement. It warms my heart to look back at some of these experiences. But how did our journey start?
Once my husband Garette and I decided to have a baby, we struggled for several months. When we finally got involved with our doctor, he teased me that at my age, we’d have to be a lot more intentional about our methods. Sure enough, following his advice, we were soon celebrating the awaited pregnancy. Garette had chosen the name of his first daughter as a teenager, so we knew that if we had a girl, her name would be Abigail. At our 20-week visit, we were thrilled to discover that this was the case and to see Abi for the first time. We also discovered something we were much less prepared for. Abigail was missing her right eye. The doctors didn’t know why and still now, after a host of genetic tests and discussions, there’s no clear syndrome or cause. This was hard news, yet I had a strong sense that this child and the circumstances surrounding her life would be for God’s glory. I found out later that God had touched Garette’s heart with those very same words.
As we were nearing the time of Abi’s arrival, our excitement mounted, and I discovered something else. Garette was an artist. He painted a beautiful nature scene on two of her bedroom walls. While we enjoyed working together to prepare Abigail’s room, quite a bit was happening medically. With the frequent tests and ultrasounds of a geriatric pregnancy, my doctor discovered that Abigail wasn’t drinking the amniotic fluid as expected. I gained about 45 lbs of mostly amniotic fluid! Our doctor performed an amniotic drain to reduce the risk of premature birth. I’ll always be grateful to him for all the steps he took to ensure that Abi had the best chance to thrive.
About a month before birth, our doctor noticed something unusual near the base of Abi’s brain. His initial belief was that this was blood, and he brought us in to inform us that there was a significant chance our child wouldn’t survive. This was a difficult time for Garette and me. Our church family surrounded us with prayer and encouragement; some came over to our home to pray with us. Thankfully, it was later determined that this was a mass in her brain rather than blood. The doctors believed she would need brain surgery shortly after birth. At this time, I was working for a doctor who was friends with the neurosurgeon, Dr. Ben Carson. He was able to help us get an appointment and transfer our care to Johns Hopkins, where Dr. Carson was on staff. At 5 days old, Abigail did have brain surgery where they removed a portion of the mass to alleviate the pressure on her brain. To everyone’s relief, it wasn’t cancerous. It was extra brain tissue, and despite the many possibilities, her cognitive abilities were only minimally impacted.
When Abigail was born, she was immediately surrounded by professionals and whisked away to be intubated. The tube placed in her nose went down into her throat and prevented vocal sounds. The first time I saw her cry without making a sound, I went into the bathroom and cried myself. In the days prior to her surgery, I prayed that I would be able to hear her voice and hold her before the surgery. Shortly after that, for a time, the doctors tried a different device for administering oxygen, which was called a CPAP. It utilized a little cup that covered the nose in place of the tube that was inside it. For the first time, I heard Abi cry…the most beautiful sound on earth that day. Also, on one of the days leading to her surgery, there was a different nurse on duty in that part of the NICU. I don’t know if she was supposed to allow it, but she brought in a rocking chair and allowed Garette and me to sit and hold Abi. In so many ways, the kindness of the NICU nurses during this time brightened our experience.
After one and a half months, Abigail had a trach & g-tube placed and was able to transfer from the NICU to a children’s hospital. Again, the doctors explained that because she’d been intubated for the procedure, her vocal cords may have been damaged and she might not ever be able to speak. Initially, she learned to sign. Yet, after several months, when she was strong enough to get air around the trach, she began to talk…and talk…and talk, making up for all that lost time. Sometimes I smile when I think of those anxious moments when we didn’t know if she’d ever be able to do that.
After another month and a half, Abigail was finally able to come home. She came with machines and tubes, home nurses and therapists, but we were so glad to have her with us. Our family, my parents, and my brother’s family all lived on the same street, so we had plenty of company and support.
Abigail’s unique facial features naturally draw attention wherever she goes—sometimes positive, sometimes not. Many adults, and even some children, pause to offer kind affirmations, often telling her, “You are beautiful.” However, not everyone is so considerate. Some people stare, and children in particular, often ask, “What happened to your eye?” These questions became increasingly more frustrating for Abi. To help her navigate these moments, Garette encouraged her to use lighthearted responses to deflect the curiosity. She later grew more comfortable and self-accepting. In fact, she’s chosen for the time being to forego surgery and enjoy her appearance as she is.
At present, Abi is a very bright 14-year-old who loves music, reading, singing, meeting new people and sharing her faith. As an adult, she would like to become a missionary. This has been her goal for as long as I can remember, and we’ve watched her grow toward it. There are still many obstacles for her to overcome, including a more recent epilepsy diagnosis, but each year brings fresh evidence that truly all things are possible.
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