I am blessed with good health, but I lost my mother to cancer in 2000, and I have a special needs son (Joshua). After reading James “Rhio” O’Connor’s story, I believe I would behave similarly if I found myself in the same situation. I say this based on the way in which I have handled Joshua’s illness, and by using my mother as a role model.
My mother knew she was terminal, but she did not give up. She lived her life fully until she passed away. She was upset when she was hospitalized for the last time because she missed a scheduled white water rafting trip. She was diagnosed with breast cancer that metastasized to her bones. She attempted traditional forms of cancer treatment, but she also tried changing her diet and holistic methods of treatment. When the radiation treatments caused severe burns to her body, she made the choice to no longer endure the radiation treatments. She researched all her options, discussed her options with experts, and made her own choices. She often chose quality of life, and she never regretted her choices. My family has a strong faith in God. We prayed for God’s Will to be performed on my mother, and we prayed for God’s comfort and strength when we realized His Will was not for her healing. My mother did not want to pass away, but she was at peace with her death.
Joshua’s problems were noticeable at an early age, but we could not obtain a definitive diagnosis until 2005. In 1996 his problems became very pronounced and he had a psychotic break. After thoroughly researching his condition, I was fairly certain that my son had Schizophrenia; however, Schizophrenia was not normally diagnosed in children. It was believed that Schizophrenia did not develop until an individual reached his or her late teens, or later. I began taking him to doctors, but I was not able to obtain an effective treatment for him locally. I branched out further and scheduled an appointment for him with Egleston Children’s Hospital in Atlanta, Georgia, but we still came away with no answers, and no effective treatment. I found a clinical study on Childhood Onset Schizophrenia at the National Institute of Mental Health (NIMH) in Bethesda, Maryland. I contacted NIMH, and they were very interested in meeting my son. After interviewing our family, NIMH invited us into the study. In 1998, my son was hospitalized at the NIMH hospital while my younger son and I lived at The Children’s Inn on the NIH campus. After six months of hospitalization, the doctor’s were could not give us a definitive diagnosis because my son did not fit neatly into any specific category; however, the doctors did prescribe him Risperadol. The medication changed our lives. Joshua never returned to his original state of mind, but he did improve greatly and was able to function more normally; however, in late 2004 his medication quit working. His psychiatrist suspected it was because he was going through puberty and growing quickly. His body was metabolizing the medication too rapidly. We tried increasing his dosage, adding other medications, and completely changing his medication to no avail. Again, I contacted NIMH. They interviewed us a second time, and invited Joshua into a study for the medication Clozopine. He spent another six months in the hospital at NIMH, and when we left he was functioning on a much more normal level. In the event we endure another psychotic break, NIMH will be the first place that I contact; however, if we do not receive positive results, I will not give up hope. I will research everything all over again in hopes of improving his life. We are very excited to be returning to NIMH in February 2010. New genetic findings are offering us the first hopes for a possible cure for his illness. Biopsies will be performed on Joshua, his brother, and myself. They hope to find what Joshua’s DNA is missing, and to grow it. This technology is similar to stem cell transplants, and it has been used to cure other illnesses. Nothing may come of it, and it could take years for it to be fully developed; however, as I stated earlier, this is our first hope for a cure.
I do not believe that any options should be easily discarded without lengthy research. My main source of research has been through the internet, but I have also scoured the library and bookstores. I have talked with professionals in many different fields ranging from nutrition to psychiatry, and I have talked with many people who have experienced similar illnesses.
In addition to research, my family has a strong faith in God. We pray for God’s Will to be performed. If it is not in God’s Will for a cure for Joshua, we will pray for God’s strength and comfort to guide us through it all. Furthermore, we provide and receive strength from other individuals who have shared similar experiences. For example, I am still in contact with families we met while Joshua was hospitalized at NIMH. Again, my mother was a role model in this area. She joined a breast cancer survivor group in her town and on the internet. The members of her internet support group contributed squares for a quilt, which were sewn together. A representative from the group flew in to meet my mother, and to deliver her the quilt. It boosted my mother’s spirits, and possibly extended her life. I am a firm believer that love, compassion, and understanding all aid in our mental wellbeing, and a healthy mental wellbeing aids in our physical wellbeing. Proper nutrition, proper medication, spirituality, and love can all be used together for optimal mental and physical health.