Blog · August 29, 2019

The Magic of Books

This year I am on track to read about 40 books. I read 30 so far. Surely some are tiny quote books, but several are much longer, thick books. I am not sure if I am trying to avoid reality or just wanting to fill my time with things I can learn from or distract myself with… perhaps a mixture of both.

When Nicky was born I tried to fill in the gap of knowledge by perusing the web and the public library. Looking through the pictures, I gasped. Their bodies looked painful, hands webbed, bandaged, in wheelchairs. Was that how Nicky was going to be when he grew older? What effect would EB have on his body? How long would he live? Were there any treatments to make it better? Was there any research going on? There were no answers. In late 1996 the internet was in its infancy and I could not find a single solitary book written by a parent of an EB child or a book about EB per se other than blurbs in Dermatology textbooks which helped none. Years later I would find the books written by Lillian Sparks (she wrote 3 in total) about her son Byron and I always knew I would have to write my own book, my own story not only to raise awareness but to somehow help other parents raising children with this very rare, very difficult disorder.

I read books of all kinds. I listen to audiobooks in the car and on my morning walk, plus I take a soothing epsom salt bath every week where I lay there and just… read. I have a little “library” by my bath and I read many books at one time. I normally have at least one biography, one book about loss or spirituality of some sort, one book about caregiving or special needs, one book about Italy of any kind (moving there, living there, art, travel…whatever!), one book about the Camino di Santiago (I am going to do this someday!!!) and, of course, the next Outlander book!!

  1. Biographies are the salt of the earth for me. I’ve learned so much just reading about other people’s struggles and how they coped with them. I don’t read about just any celebrity of any kind just because I like them. They have had to go through something. The loss of a child is top of the list, but it might be also about specific issues, such as Andrea Bocelli‘s blindness or Caitlyn Jenner‘s trans journey. It’s all infinitely fascinating.

  2. Books about spirituality or loss are very appealing to me. They have taught me how to cope in ways I would have never otherwise learned. When Alex died at full term I didn’t blame God. I am glad I didn’t then and I don’t now. I don’t believe God causes us to be hurt, sick, or to suffer a loss, but I do believe that God finds ways for us to use bad things for a good purpose. Such as teaching our soul lessons like perseverity or compassion.
    Deciding to try again after the stillbirth and the miscarriage wasn’t hard at all. I was not a quitter, I wanted a child.  I didn’t know Alex died because of EB, and even now I am not sure that’s what happened, all I know is that I wanted to be a mother and nobody was going to stop me from fulfilling this dream. I am so glad I did. I do believe that losing Alex made me a better parent to my living children as well. Reading these books helped me put things into perspective.
    I read books by James Van Praagh (I even went to see him with Nicky at an event!) Kim Russo and Brian Weiss among many others to help solidify this particular point. We are souls having a physical experience.

  3. I’ve been reading books about Special Need parenting or caregiving from the get-go. I struggled with a lot of issues that these books helped me navigate. Being home with Nicky, hence, leave my career and stay home to care for him, made practical sense, but, more importantly, it was the right thing to do. For me, looking after Nicky and then both boys was a full time job. Nicky relied on me for everything from the time he woke up until the time he went to bed. He did when he was little and he does now that he’s 22. I don’t see things change unless a cure comes. Books have helped me realize I am not alone and how to cope.

  4. Oh, Italy!!! I grew up there and I miss it more than anything except, of course, the people I love that live there, my family. When my husband retires we’re moving back. I cannot wait. I read a LOT of books about Italy. All kinds, really. It makes me fall in love more and more, as if that’s possible!
    I’ve never lost my Italian identity. If anything, I’ve acquired a greater awareness and attachment to my motherland.  Italy… is magic. There are many busy cities and quaint old villages, each one built around an ancient cathedral. Curves are everywhere, from the winding roads to the architecture. In everything-the people, the food, the music-there’s passion. Why did I ever leave again?
    I have to be honest here. I grew up believing that the United States was the greatest country on Earth. I learned in school that it was founded by pioneers with grand democratic ideals. I had family in the US and we saw it on TV and the Movies constantly, it became a dream to live here. It never occurred to me that the nature of flaunting itself as No. 1 meant everyone else was second best, and after living here for 35+ years and having experienced firsthand that “second best” was actually a whole lot better than what I was taught to believe, I felt a profound sense of betrayal.  The truth is that the US isolates itself in a way where it cannot learn from the successes of other countries in areas such as electing Presidents, Health Care, Education, School Lunches, College Tuition, Childcare, Paid Maternity Leave and more. Americans can be very egocentric in their thinking. The USA is not the center of the universe. Yes, this country is BEAUTIFUL and it is great, don’t get me wrong, but that doesn’t mean that there aren’t issues that could be addressed.

  5. I first learned about “pilgrimages” when I saw the movie “Wild” with Reese Witherspoon about a woman walking the Pacific Coast Trail trying to come to terms with her mother’s death. After that I came across books about the Camino di Santiago and now I am nearly obsessed. My sister wants to come with me, isn’t that just perfect? I feel a calling of some sort. I don’t know if or when I can even do it, but I am going to keep reading about it and grabbing some inspiration along other traveler’s way.

  6. Outlander!!!! OMG, aren’t these books amazing or what? And long. Yes, very, very long. I am on book #5 at the moment, reading ahead of the upcoming season which will air on Starz in early 2020. I hope to be done reading it by then? This book is super big.

Of course I also read other miscellaneous books here and there. At the moment I am reading a book of the best Ann Landers columns, and I just finished a book about Cinematherapy (I LOVE movies!!!). I go to thrift stores and I browse. Sometimes I come out with nothing, and then sometimes (like two days ago!) I came home with 6 new books! 6 books were like $10 total!!! When I finish reading them I usually donate them unless it’s one I don’t want to part with. I want others to be able to find some magic as well.

Love & Light

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