Our Son Josephby Joseph's Daddy
What a surprise Michele and I had when our child was born! The doctors and nurses in the delivery room all shouted, "It's a boy!" "A boy?" I thought. We had had three sonograms in which the doctors declared we were having a girl. "What's his name?" someone asked. Michele and I had not discussed a boy's name for four months and we had not agreed on one. Michele looked at me and said, "Joseph? You liked the name Joseph." Yes, I did. Joseph meant "He will add" and Joseph was certainly adding to our life. Joseph Miller Robinson was born on September 12, 1996 at 6:32 pm at York Hospital, weighing 6lbs and 11oz.
I wheeled Joseph back to the nursery where a nurse checked him over and gave him a sponge bath. He sucked hard on my finger. He seemed healthy and strong. The future looked good.
In the days and weeks to follow, Joseph continued to impress us with his abilities. At the age of two weeks he was lifting and holding his head up for long periods of time. Before long he was smiling, laughing and rolling over. Joseph was very active and wanted to explore his surroundings. He would often show frustration at not being able to move on his own, or grab things. He was hitting his developmental milestones right on schedule or even early. It looked like Joseph would be an exceptional child and we felt very blessed.
Right from the start, though, Joseph did not sleep much (and neither did mom or dad). At two weeks, he was awake most of the day. For many months, he was getting a total of six hours of sleep a day -- a normal child his age sleeps about 18 hours a day. Joseph was also easily agitated and irritable. He cried a lot and would become so exhausted that his cry would sound like a little bear cub growling, so we nicknamed him "Joey bear."
Early on came the frequent visits and consultations with doctors. We were told he had the mysterious condition of colic, then we treated him for reflux and then his chronic constipation. But he still did not sleep much and was irritable. We spent our days and nights with him trying to take his attention away from his pain. Even with the pain he must have felt, however, Joseph still smiled and laughed. Underneath his terrible condition (which we did not realize at the time how serious it was) was a happy and friendly little boy with a big heart and a desire to live fully.
Joseph had a million dollar smile which just beamed how much he loved life. We think that sometimes he would giggle to make us smile. When he first began laughing he sucked in air so quickly that he sounded like a dolphin squeaking and clicking. Later he developed a goofy sounding laugh that we loved to hear. He would tilt his head back and make a huh-huh-huh sound.
Joseph loved to be physically active. But after four and a half months he began to lose his abilities. A month later, on February 21, 1997 we heard a new word -- Krabbe's -- and knew the reason why Joseph was sleepless, irritable and was unable to grab things any more. It was the worst day of our lives. But Joseph did not understand, he only knew that he wanted to live. As he declined in his physical abilities, we had to do things for him. He loved to have us bounce him along the length of the sofas and hold him up as he "walked" along the floor. It was exhausting on us, but a joy for him.
Joseph loved to watch television, especially cartoons and CNN Headline News (we think he liked the faces). As his eyesight became worse with the progression of his disease, we had to sit closer and closer to the television. But even up to the end, Joseph would open his eyes to watch the changing colors and pictures. While we were in North Carolina, we discovered his favorite video, "Muppets Treasure Island Sing a long." His eyes always opened wider when we would run his video and it ran several times a day.
Joseph loved to see pictures and have books read to him. He liked a talking book called The Surprise Party Surprise about Winnie the Pooh. Joseph's favorite book was Brown Bear, Brown Bear, What Do You See? especially when daddy would make the sound of the animals on the page. He would laugh so hard at the fish noise. We also had a Brown bear puppet who liked to "talk" with Joseph. The last time I saw him smile was in July when Brown Bear was talking to him. But even as he declined, and even when we were not sure about what he actually understood, we kept reading, showing and doing his favorite things.
Joseph also loved playing in the water. When he was young, he liked to splash the water in his bath tub and get daddy's shoes all wet. Later on he liked to float and play with his water toys. Then, in his final months, he was recommended for water therapy and even though he lost virtual all of his ability to move, he still would throw his head back to soak it in the hot tub. Joseph enjoyed water right to the end. The night before he died he floated, did his exercises and threw his head back in the water.
Michele and I have been blessed. Joseph brought joy to our lives. We so dearly wanted our son to live a healthy and long life, and we tried everything we could to make that happen. Although we grieve at his short and painful life, we rejoice in having known such a wonderful child who smiled and laughed through pain and who struggled long and hard to live. He was strong and determined (some might call him stubborn or strong-willed).
Many people, especially his parents, prayed for Joseph to have a miracle. We did not receive the miracle to extend his life to "normal," but Joseph's life did produce other miracles. One of the greatest things his life accomplished was to bring people together -- not just to raise money, but to care for one another and cooperate with each other. People who did not know each other worked together and many others overcame their differences for something greater than themselves. The people of our church, surrounding community and even strangers across the country and beyond generously supported us with their prayers and financial gifts. In his short life, Joseph did more to bring people together for good than I have in all my years of ministry. Joseph Miller Robinson has touched all of our lives in some way, and he has blessed us with his life. He certainly has "added" to this world.
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