When we first found out that our twins had cerebral palsy, it didn't come as a complete surprise. I had been noticing some things that didn't seem quite right, but the doctor had said the developmental delays were probably due to their prematurity (they were born 10 weeks early in 1991). I noticed that both children would often have a "stiffness" to their bodies. It was hard to cuddle them in the way you normally would with an infant or toddler. They didn't sit up, crawl, or walk at the time you would expect those milestones. They cried almost non-stop throughout the day. There might be a 45 minute reprieve during a nap, but then the crying would start again. To say I was a frazzled mom would be an understatement. We also had a very precious little boy, Evan, born exactly 9 months earlier, who I felt was getting too little of my attention. Sometimes he and I would drive into the next little town for a hamburger at Burger King and a quick stop at the grocery store. He was such a wonderful little companion and never any trouble to take anywhere. But then we would return home. I would try my best to love and nurture the twins, but I was operating in survival mode. I was also truly exhausted. I poured out my heart to God time and time again. They were prayers of utter desperation, "Oh God, please, please, help me." But in all honesty, all I could hear was silence. Looking back now, I can see that God was close, so close, but I couldn't really see it or sense it.
I wish I could say that things got better, but to be honest, things became worse. One of our twins, Alex, suddenly stopped breathing one afternoon. I seemed to be experiencing everything in slow motion. I called for my husband who quickly took Alex and began rescue breathing while I called the ambulance. Alex turned a dusky blue color, but then began breathing again. The doctor examined him at the emergency room, but couldn't find anything wrong. From then on, I lived in constant fear of this happening again. It did happen again - many times. I can't even explain the feeling of never knowing what a day would bring. We began to see a pattern that gave us some level of being able to predict a breathing episode. If it was warm one day and then the temperature dropped the next day, we could be fairly certain that Alex would have problems breathing. He would quickly develop croup,which always seem to lead to his system totally shutting down.
I prayed so many times. I was so full of fear and panic. I wasn't even sure God was hearing me. I had never felt so alone in my life. Somehow, Dave and I managed to get through life day by day, hour by hour, sometimes minute by minute. Dave has always been the strong one that I can lean on, but I know how hard it has been on him. I know the times that he has felt overwhelmed and exhausted, yet having to make life and death decisions. I don't know how many times I have seen him working on Alex and trying to get him to breathe again.
One time in particular stands out in my mind. Alex was once again taken to the hospital and admitted. Dave was with him on this day, while I had went home to be with our other children. Alex's condition suddenly began to deteriorate. He began having trouble getting his breath and he asked Dave, "Say good job, Dad. Say good job." Dave leaned in close and said those words to him as he tried to calm himself and Alex. Dave called for the nurses and Alex was quickly put into the intensive care unit. They gave Alex medication to put him in a coma like state so that he didn't have to fight so hard to breathe. After many anxious days, he was able to come back home. He had pulled through yet another time. He was just three years old.
It was some time later when we were visiting my parents in Mississippi, that we had a glimpse into that time he had spent in intensive care. He was sitting in my parent's living room and happened to see a photo of my aunt Loretta. He pointed to her photo and said, "I know her." My mom said to him, "Oh, honey, you never got to meet her. She is with Jesus now." Alex looked again and said, "I saw her. When I was very sick at the hospital, I saw her. She had on a white robe and she looked at me and said, 'Hallelujah!'" My mom and I looked at each other in wonder. He hadn't said anything about it until that moment when he saw my aunt Loretta's picture. That photo seemed to have triggered his memory.
*End of Part 1
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