Inspire, Summer 2003

30 Summer 2003 Claudia Whitestine Porpiglia ’79 tells of the struggles and joys of having a developmentally-delayed child. I ’m not sure how old I was when I realized that I wanted to be a mother, but it seems like I’ve always wanted to be one. Although I was very much a tomboy, I loved babies. When my husband and I met and began dating, we talked for hours about having a family and even discussed what we would do if we had a handicapped child. We had a good friend with a severely handicapped daughter, and on the day of the daughter’s birth, the father walked out. We were appalled that anyone could turn his or her back on any child. During all of this discussion, we never could have known what God had in store for us or how important the commitments that we made then would become. Our daughter, Tina, was born ten months and three days after we were married. By all appearances, she was a beautiful, happy baby with a perfect “China doll” complexion. The first six months went fairly smoothly with the exception of numerous ear infections. Then, at six and a half months, Tina had a grand mal seizure that lasted just short of an hour even with heavy IV medications being administered. Nothing could have prepared us for the road God was choosing for us. Within days of that first seizure we began to realize that Tina had been having petit mal seizures for months. Everyone had thought that she had a heightened startle reflex because of the ear infections, but the doctors confirmed that these were seizures. As she began to sit on her own, we identified another type of seizure known as a head drop seizure. Hundreds of times a day Tina’s head would drop for a split second. During meals she even learned to get a bite of food while her head dropped into her plate. Over the next two years we tried every medication available and many combinations of those medicines with no real seizure control. Tina’s grand mal seizures began to lengthen, some lasting up to four hours at a time, with or without treatment. Tina was diagnosed as developmentally delayed. She made sounds but could not form words. She did not walk until she was almost three years old. The various brain scans she had revealed no measurable brain damage and doctors could not explain her developmental delay. By the time she was four and a half, she had had two major brain surgeries to help control her seizures, and we had totally given up on using medications. The surgeries eliminated the head drop seizures and shortened her grand mals to under five minutes. During all of the above, God was challenging my heart. I knew that I believed God was in control, but putting that into practice on a day-by-day basis with all that was going on was difficult at best. Every time I thought I had truly accepted the situation, I found my faith in crisis again. In the meantime, we had a son, Paul Richard, who was as opposite from Tina as he could be. He was never sick and did everything early. Every developmental milestone that he passed brought a mix of joy and sorrow and made Tina’s lack of development even more evident. My husband found it very easy just to accept life as it was, and he didn’t understand why it was so hard for me. My faith was shaken, my hope seemed gone, and the reality of everyday was overwhelming. On top of just trying to care for Tina the best I could were the constant battles with doctors, insurance companies, the school system, the state, and anyone else that was supposed to be helping us. Our days were filled with doctor and therapy appointments. In the midst of all of this, God continued to strengthen me and lift me up. He helped me continue to fight for what was best for Tina even when the experts said there was no hope. He gave Paul Richard a deep love for his sister and an ability to minister to her in very special ways. He gave my husband the ability to work three jobs so that we could meet our financial obligations and I could stay home and care for the children. I was torn between rejoicing and mourning on almost a daily basis. The year that Tina turned 11 years old, I began to panic. I could not imagine caring for her the rest of my life and yet I knew too much about facilities for the handicapped to think that I could ever place her in one. Our life at this point had reached a level of normalcy and yet my faith and hope were seemingly waning and the reality of daily existence loomed over me like a huge, dark cloud. I pled with God for some relief and God answered in His usual unique way. In a period of four months, Tina had to have brain surgery for fluid on the brain, she developed meningitis and became very ill and even more incapacitated, she had to have a second emergency procedure for the fluid on her brain, and she then had to have a mechanical pump implanted to address severe spasticity that resulted from the meningitis and Faith, Hope, and Reality C l a u d i a W h i t e s t i n e P o r p i g l i a ’ 7 9 I knew that I believed God was in control, but putting that into practice on a day-by-day basis ... was difficult at best.