Ah yes, what to write, that is the daily dilemma. Many people have defined blogs while mine meanders on many subject matters. I haven’t written since January for many reasons, one of which is that I know I have a limited audience. Maybe I felt freer without knowing what might be expected of me. For example, my daughter loves hearing about when she and her brother were kids, and I also have some chronic illness buddies who swap stories about struggles and triumphs. Then there are the empty nest parables I write about, yet I struggle to strictly define myself to any one subject matter or mood. For now I’ve decided to continue with this blog being a hodge-podge of whatever. And while any writer loves having readers, at this point my goal is just to write for the simple pleasure of it.
The year did not start off with good news. A thirty-something Twitter friend – Kim – my first real “Tweep” was diagnosed with stage IV lung cancer on January 4. She died only eight weeks later, leaving behind a twelve-year-old daughter who has neurofibromatosis as well as an eleven-year-old son. Kim’s Twittrr account was based on raising awareness for neurofibromatosis – a disorder which can cause the growth of tumors in external and internal places. Kim struggled to make ends meet and had to overcome family entanglements that were quite complicated. Yet she was as steady as a ship in stormy seas when it came to her children. She never faltered in her unwavering love and devotion nor her efforts to help her daughter as best she could. I can’t imagine how anguished Kim must have felt when she knew there was no hope for her to live to see another spring. Her thoughts surely stayed on her “kiddos” as she called them, and she was probably so pained at having to leave them behind.
I miss Kim and miss the comfort of knowing that she’s just a tweet away. Kim made me laugh. She taught me about perseverence when everything in the world appears to be stacked up against a person, or more specifically, a single mom with a chronically ill child. And I did learn about neurofibromatosis or NF as it is also known. She introduced me to many of her Twitter friends who also have NF. They are good hearted people ranging in age from teens to seniors. I try to help raise awareness about finding a cure for NF as well, through retweets or donations if I’m able. NF is as real as these Twitter friends who grapple with this disorder in varying degrees every day.
I hope if I’ve reached at least one person who’s never heard of NF with this post, then I will be honoring Kim and her daughter in some small way. We used to tweet everyday about NF, urging followers to Google the term. I ask anyone who sees this to learn more about it. Sometimes NF causes tumors or bumps to grow on the face or other exposed areas of the body. This has lead to staring and bullying, and that’s never okay. So please, take a few minutes and Google Neurofibromatosis. Knowledge is important in understanding others. It was extremely important to Kim. Thank you.