Special needs parents are extraordinary caregivers. Some are caregivers for only a short time; others begin a lifetime of caregiving on baby’s birthday. Here are two stories that will stay in my heart always.
Debbie and her husband Rick were expecting their first child. Debbie was doing everything exactly as she should for a healthy pregnancy, yet she was so much bigger than she should be for how far along she was. Her doctors ordered special testing and eventually they discovered that their unborn daughter was afflicted with a number of life-threatening chromosomal defects. The doctors recommended that Debbie and Rick terminate the pregnancy because the infant would probably not survive, and if she did her short life would be unbearable. But Debbie and Rick decided that termination was not the right choice for them or their unborn child. Thus, they began the grieving process for a loss that was still many weeks away.
Debbie continued to work as a labor and delivery nurse during her pregnancy. She celebrated with new families as their infants came into the world. She accepted comments from others regarding her own pregnancy and criticisms from some on how “big” she was and how hard it would be to lose weight after she delivered. Debbie never shared with them what she and her husband were facing. She never let them see the pain their comments created. Her nature was simply to carry on.
Debbie and Rick chose to share their grief only with immediate family and a few close friends. When Debbie went into labor, Rick was working hours away. Debbie’s support circle of her sister and two close friends were at her side. I was blessed to be in that circle. We stayed with her through the course of her labor, comforting her, praying aloud that Rick would arrive in time and praying silently that baby Kara would be born without the defects we had warned to expect. After all, we were all nurses and we had seen miracles before.
Debbie delivered a beautiful baby girl, perfect to the eye. We all took turns holding her and cooing sweet words mixed with tears. How could any child so perfect-looking not be perfectly healthy?
Rick arrived shortly after the delivery. He and Debbie had time alone with their new daughter. Their love for each other and their newborn was palpable to those present in these first hours. Kara died in her mother’s arms several hours after her birth. She could not have asked for better caregivers here on earth.
Terry’s daughter was young, unmarried, and pregnant with twins. He and his wife supported her completely despite the fact that they were already overwhelmed with health issues of their own. Terry could not work because of illness and his wife was the sole breadwinner of the family. He tried to do what he could to help around the house but his capabilities were limited.
When their daughter delivered, her first born was a healthy baby boy and his twin was a struggling little girl with numerous health problems from her first breath of life. After many months in NICU (neonatal intensive care), baby Sonja finally came home.
Sonja arrived at Terry’s small, already crowded home with all the equipment needed to support her. Her life relied on a ventilator that assisted her breathing, an infusion pump to instill her feedings through a tube placed in her stomach, an arsenal of medications and her own private duty nurse. The expectation was that the nurse would care for Sonja for a portion of the day and the family would have to learn to care for her the rest of the time.
When I first met Terry and his family, the babies were toddlers. The house was crammed with a variety of toys for the little boy and Sonja’s crib and equipment took up most of the space. Terry’s supplies were piled up in a corner. Despite his rapidly declining condition, all of his focus was on the progress his “baby girl” had made. She now smiled at familiar voices and was slowly being weaned off the ventilator. Pictures of her in a lacy red velvet Christmas dress propped in her chair with her brother standing beside her were displayed on the end table.
Terry and his family were quite aware of the challenges their family faced but they found joy in the small accomplishments made. Terry worried what would happen when he wasn’t there every day to supervise the comings and goings of the health care staff that saw to Sonja’s needs; what would happen if his daughter one day decided she wanted more from her life then coming home every day from school to care for two small children; and what would happen if his wife couldn’t maintain the stressful balance between work and home.
Sonja needed a larger village than most children to stay healthy and to make the few small milestones she could achieve. Her family was connected to support services from the day she was born.
Terry and his family knew that they needed to reach out to others to survive. Sometimes, the better part of caregiving is recognizing your limitations and building a village of support.
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