Overcoming Life's Challenges

Life is a challenge for each and every one of us on earth. No one is genetically perfect and no one is born without a weakness. Thinking about those two sentences has helped me to be able to help my two children with Shwachman-Diamond Syndrome (SDS) to live a "normal" life. My oldest, non-SDS son has faced many challenges in dealing with two chronically ill siblings. Yet, in the scheme of things, he has a relatively normal life. He and my two SDS boys have been able to do what most would consider normal childhood activities. I was honest with my oldest son and told him that it would be unlikely that he would ever meet another person who had two siblings with a disease like Shwachman-Diamond Syndrome outside of our visits to Victory Junction Gang Camp, Cincinnati Children's Hospital and Camp Sunshine.

God created each one of us and He gives us each special talents. We are all born with strengths and weaknesses. As parents, it is our job to help our children identify their strengths and to overcome their weaknesses. We must do this for all of our children, not just the children who have chronic illnesses or physical handicaps. My healthy son struggled in school with reading comprehension problems and still struggles with spelling. My middle son may have Shwachman-Diamond Syndrome and become tired a bit more easily, but he has still done a great job at playing sports. He doesn't have the comprehension challenges that my healthy son faced and he does a great job at spelling, often making an A plus on his tests. My middle son is also an excellent piano player and we have tried to help him excel in piano, just as we have tried to help our oldest son excel in football, a sport that he loves and does well playing.

From the very beginning of our diagnosis journey, we set out to make sure that all of our boys had as normal a childhood as was possible amid all of the hospital appointments, doctor visits and procedures. This is certainly not an easy task. We have learned to schedule around field trips and special outings. When we drive to Cincinnati Children's Hospital (from North Carolina), we try to do at least one fun thing each trip-visit a museum, zoo or aquarium. We also visit with friends in the area. This has helped to make our trips to Cincinnati fun and not all about bone marrow biopsies and hospital visits.

As a parent of a kid with special health care needs, you are going to face many challenges that other parents will not have to face. Your children will face challenges that other children will never have to face. Even amid these challenges, you can live a full and exciting life.