Tonight's picture was taken in July of 2009. Literally a month before we found out that Mattie's cancer was terminal. Amazing the difference a month, or a few weeks can make! We knew Mattie wasn't eating and he wasn't feeling well, but the doctors kept assuring us that this was just a side effect of the chemotherapy. Some how I did not believe it. Some how I suspected something wasn't right, mainly because I was listening to what Mattie was telling me. I believed him. I assure you I heard all sorts of explanations from the doctors, everything from he was manipulating me with starving himself to..... he was addicted to a pain meds! Honestly! I wonder if the doctors ever felt any sort of remorse for these statements? I am sure they did not lose a minute's sleep over any of these false presumptions, but I remember each of them! I love this photo because Mattie took one of his buckets from the hospital (he had a sense of humor!), and decided to make a pretend bug soup! I filled the bucket up with water and he threw in all his plastic bugs and I gave him a big spoon. He had a fun time concocting on the floor that day.
Quote of the day: Most people who offer their help do it to make themselves feel better, not us. To be honest, I don't blame them. It's superstition: If you give assistance to the family in need... if you throw salt over your shoulder... if you don't step on the cracks, then maybe you'll be immune. Maybe you'll be able to convince yourself that this could never happen to you. ~ Jodi Picoult
This evening Peter and I sat down and were watching TV. We watched a show that I had never seen before on The Learning Channel called, Born Schizophrenic. I love watching shows about mental health issues and human interest stories. Fortunately Peter has a diverse set of interests and as long as the story is engaging and compelling, he is happy to watch along. Tonight's series captured his attention immediately. How could it not! It was the story of a couple in California who have two children. One of them is a girl named Jani, who at the age of six was diagnosed with schizophrenia. Which is VERY unusual. Typically this mental health disorder gets diagnosed in one's late teens or early adulthood, or at least older than 12 years of age. Jani was highly unusual. This particular episode of this series introduced us to Jani, her parents, and her brother.
Peter was captivated by Jani's dad, who said that in his wildest imagination he never thought that children developed mental illnesses, much less that he would have a child with a mental illness. Why this resonated with us is because we say this to ourselves about Mattie, only replace the words mental illness with cancer. The disease is different but the sentiments expressed were exactly the same as we feel. As we were watching Jani's parents manage her disease, the stresses on their marriage and their concerns for their daughter's future, everything made perfect sense to us. One has to marvel at the strength, passion, and conviction of Jani's parents. They have really fought incredible odds to get her to the stable place she is at today. Jani's road has been challenging with a great deal of therapy, medication, love, and parent support. But if this wasn't enough to contend with Jani's brother has also been diagnosed with mental illness.
Seeing tonight's episode about Jani further reinforced to me how life altering it is when something happens to your child. It turns your life around. Jani's parents are living proof. Their world has and will never be the same since they had children with profound mental health issues. Yet they take their role as parents very seriously and through all of this, they channel the frustration and pain to advocate and help others. Their story can't help but capture your attention and their daughter's journey truly shows what love, persistence, and what early interventions can accomplish.
Story about Jani:
http://abcnews.go.com/Health/born-schizophrenic-mentally-ill-children-threaten-tear-family/story?id=23687000
Jani's Foundation:
http://janifoundation.org/
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