Josh's Parents
We were a young family expecting the best. Our third child was about to be born, and no complications were in sight. Until the delivery. At first, doctors thought it was a breech birth, but we could deal with that. Then, they noticed a dark patch at the base of the baby's spine: "Placenta previa," they thought. (Placenta previa occurs when the placenta is positioned so that it comes before the baby. It can causing severe bleeding or interfere with respiration). "OK," we said, "We can deal with that." Then our son Josh arrived, and they said, "It's spina bifida, and we're sending you to Hanover. They'll take care of it." But it wasn't that easy. Many tests followed, along with doctor's reports that led to an incorrect verdict of severe brain damage and questions of whether to let our son live.We struggled to make the best decision. The only thing that got us through the week was family and prayer. But God blessed us with skilled doctors, and we have never regretted our journey. Spina bifida is a birth defect that occurs early during gestational development. It affects multiple systems, including the nervous system and the musculoskeletal system. There is usually a buildup of water causing the brain to swell, which is called hydrocephalus and requires a shunt. Josh is a paraplegic, and he uses a wheelchair to get around. All nerves and muscles below the spinal defect are affected in soina bifida, Josh cannot control his leg muscles or bowel or bladder. He wears diapers for leakage, and we have to catheterize him 4-5 times a day to keep urine from building up and causing infections in his bladder. This wasn't so hard when he was younger, but now he's 15, and understandably, he resents having to leave activities and friends to take of this basic need. His bowel problems require medication to stimulate the bowel. For years we had problems with leakage at inopportune times (like when he was swimming). Now he usually has a bowel movement during the night, but those accidents still happen and for a teen that can cause a lot of distress.
Josh is a mainstreamed honor roll student who loves sports of all kinds. His shunt has not had to be replaced, and other than minor corrective issues, he has had only one major surgery to repair a Chiari malformation. This was when he was 10. A Chiari malformation occurs when the brain stem extends down into the vertebrae in the neck. The pressure on the stem can cause headache, loss of hearing or even paralysis. Josh was fairly independent when he was 10, but the Chairi and the delayed surgery caused permanent nerve damage to his arms and hands. He lost all movement in his arms after surgery for several months. It took 2 years for him to regain most of his arm strength. He still has trouble with desensitization in his arms and hands.
Josh also has scoliosis (a curvature of the spine), because some muscles along the spine are working and others are not. We are postponing corrective surgery for this problem, because it would involve placing metal rods around the spine to support his vertebrae. As a result, the surgery would reduce flexibility in the area, thus making wheelchair transfers, leaning and reaching more difficult. It would also mean that he could not participate in many of the athleteic events which he enjoys so much. There is not much to be gained from having this surgery now, so we will give him as much time to enjoy his childhood as we can.
But this description you're reading of our son is not who he really is. Whenever he has to write about himself, he never mentions his illness or his chair (with the exception of his story here, that is). Instead, he talks about his family, our farm, his interest in sports and how he hopes to be a radio announcer. Those are the parts of his personality that he wants people to know. He wants to be recognized for himself not his defect. That makes him like most children: they all want to be liked for themselves.
Josh's sense of humor is outstanding. There are many aspects of his life that are not fun, but he has learned to laugh at these daily trials and tribulations, because it is a better way to cope. We had a choice when he was born to accept or reject him. We accepted our son, and he has taught us how to deal with obstacles that life offers. We went on to have 4 more children, all healthy. They give him the push to keep up and move ahead. With the help of family and faith, we are all meeting our goals.