A Work of Heavenly Art
Just a few days ago, I ran into a friend who mentioned that her coworker had delivered a premature baby. She had fear in her eyes when I asked if the baby was doing okay. She shook her head and said, “The baby has Downs”. I immediately responded with, “she’ll be fine . . .it will be a wonderful addition to her family . . .there are hidden blessings . . .tell her that there are many friends who have walked the same trail . . .we’re here for her . . . tell her to call me.” My friend looked a little surprised at my happiness and my response. I think she forgot that I had a special needs daughter who was 25. I really wanted to help the new mom. When a child is born like ours, unique in physical nature, we immediately think of it as a loss. When in reality, they are a work of Heavenly art. Let me explain. Sixteen years ago, we moved to North Carolina and our disabled daughter, Kelsey, was assigned to a specialized school. Shifting the siblings around to their activities made it almost impossible to visit Kelsey’s program. So I put off visiting the “special” school for nearly six weeks. In the interim, I talked to Kelsey’s special ed teacher by phone. She had a heavy accent and, not that it mattered, I wondered if she was black. So, one day, I asked Kelsey, “Is Mrs. Carter black?” Kelsey looked confused and replied, “No, she’s just like me. The next week I had the opportunity to visit Mrs. Carter’s class. I was surprised when I walked into the room. Mrs. Carter was black. My heart was touched. Here my daughter with all of her limitations had a beautiful attribute. Kelsey couldn’t tell a person’s skin color. We have had this experience with our daughter over and over again. As Kelsey grows, her innate beauty continues to emerge. Through grave medical error this past year, our daughter became very ill. Her symptoms were unexplainable. Attending doctors didn’t know that premature infants with ROP, a preemie eye condition, can get glaucoma early in life. Kelsey lost all sight in her left eye. It seemed so unfair to Kelsey who already had three disabilities. After her fourth eye surgery, waiting for her in the hospital was agonizing. I hurt for my daughter and I was angry and disappointed in her medical care. When the nurse allowed me into recovery room, I whispered to Kelsey that I was sorry. I then asked her what I should say to the doctors. She whispered, “Be forgiving.” I guess physical perfection is important in this world but these children are from a different plane. They have virtues that we only dream about for our other kids. Special needs children are celestial. Kelsey is sweet, kind, and very innocent. She always thinks of others first. She has a genuine compassion. I won’t mince words about the commitment a special needs’ child requires. You have to learn about their disease and what’s best for them and their disease. It is hard work, educating, advocating, and long, long hours. From the moment an infant with disabilities is placed in your arms, you must be responsible for them 24-7. For some, you will make all their decisions the rest of their and your life. I remember meeting a mom a few years ago, who had three deaf sons. When I asked her how she handled three with special needs, she told me something I will never forget. “Diane, think about it. They will never hear anything of this world. The last voices my sons heard, were angels.”

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