Monday, February 14, 2011

Round Two--Time to write my book!

Preparing and going through a stem cell transplant is no walk in the park.  But having already been through one, getting ready for a second one felt like a well-oiled machine.  I felt like a football coach with a white board and a sharpie, making a crazy diagram of circles and "X's" and arrows, so all the major players knew exactly where they needed to be and when.  My mother in law almost burst out laughing when she arrived for "duty" to find a three ring binder titled "Nana Sue Control Center".  In it was Jason's summer schedule, printed in daily format, including any meals which were being delivered and by whom, as well as playdates with address and phone number.  The freezer was stocked, my bags were packed, hair had been buzzed, Jason's birthday had been celebrated, sushi dinner had been savored.  I was ready to get this over with for the last time.

It was during this second treatment in the same Boston apartment we'd rented a year prior that I wrote Where Did Mommy's Superpowers Go?  I spent a few days working on it, just a simple Microsoft Word document, which I knew would require and benefit from professional editing should I ever choose to publish it.  I wasn't intent on becoming an author; I just wanted to create a book that would be helpful to other families going through the same experience as ours.  There were plenty of books out there for families going through cancer, alcoholism, divorce, depression, or death and grief.  But what about parents diagnosed with a rare, life-threatening illness that few people had ever heard of?  What about the families facing a disease with literally no public awareness or attention?  There were plenty of diseases out there in addition to amyloidosis with no annual walk, no colored ribbon, no awareness month or celebrity spokesperson.  Just from watching (too many episodes of) Mystery Diagnosis  and House, I knew there were countless diseases with little to no recognition at all.  What if these patients wanted some kind of picture book for their young children to explain what was happening to them?  I wanted to write a positive, uplifting story that families could use to help their kids understand the changes in their physical appearance and abilities without frightening them.
I tolerated the second round of high-dose chemotherapy and the stem cell transplant as well as before, and again was well enough to go home after a few weeks.  I could have sworn when I saw Jason after all that time, his face had changed and his voice was different.  And as expected, it was an awesome homecoming:

Friday, June 27, 2008
This year instead of calling Jason to tell him I was coming home, we chose not to, so as not to distract him from his playdate and swim lesson.  When the door opened, I was sitting with outstretched arms.  When he saw me, he promptly pulled a Lucille Ball and fell over on the kitchen floor!  Having him climb into my lap for a big hug after almost 3 weeks was like a drink of water after being in the desert.
Last year when I came home, it was just as wonderful, but at the age of four, he was much more 'demanding' of me physically, wanting me to get his juice, play games and do things for him as a way of making the whole thing seem "normal".  This year, he let me sit or lie down as I needed, and proceeded to surgically attach himself to my side like a conjoined twin.

Despite getting through the treatment fairly smoothly, a second bone marrow transplant is very aggressive, and my body was definitely recuperating at a much slower pace.  I was experiencing much more noticeable fatigue, as well as anemia.  It was challenging getting through the rest of the summer, but my goal was to be back up to normal speed by the time Jason started kindergarten in the fall.  When I was struggling to keep up with Jason and needed to rest, I would remind him that I didn't have all my superpowers back yet, and he would know exactly what that meant.  I was so glad that we had found a way to communicate about my condition and my limitations, and at only five years old, Jason "understood" that despite the changes he saw in me, I was still the same mommy.
When Jason started elementary school in the fall, it felt like a fresh start for both of us.  He was a big kindergartener now, and I had some time to look into publishing my book.  I started with some internet searches, and found a lot of websites that allowed authors to self-publish for a fee with a few clicks of the mouse.  I was wary about this method, and unable to determine whether the fees were reasonable or exorbitant, as I had nothing to compare them to.  Not to mention, I wanted some professional editing of my book, and needed illustrations.  Steve suggested I contact a high school friend of his in the area who was a caricature artist and had published an illustrated travel book:

Mark was incredibly helpful sharing what he had learned about book publishing and after exchanging some long emails, I decided that I was more comfortable with the traditional, old-fashioned route of submitting my manuscript to a major publishing house.  I knew this method would involve lots of work on my part; researching which publishers would be interested in my book, writing query letters, and handling plenty of rejection.  But I didn't feel comfortable with self-publishing over the internet.  I thought that if a publisher was willing to take on my project, it would be worth the extra time and effort on my end to be provided editorial and design services, as well as professional illustrations, which would result in a higher quality book.
Over the next few months, I went to the library and bookstore and compiled lists of appropriate publishers, and tried to educate myself on the industry.  It was overwhelming.  I contacted a few people who had either published children's books or worked in that area, and I was told how competitive and challenging it would be.  At times I would get discouraged and start to wonder if perhaps my book just wasn't meant to be, even though I knew this attitude wasn't going to get me anywhere.  After the intense couple of years I had just had, I was mentally and physically exhausted.  I wanted to keep up the same positive, gung-ho attitude for this project as I had for both of my transplants, but with the holidays approaching, I was feeling burned out and not up to navigating the ins and outs of a completely unfamiliar industry.  Getting my little children's book published started to seem like a daunting task, and feeling like I needed to save my energy to heal and get through the holidays, I printed out my manuscript and tucked it away, with the intention of picking it up again when I felt stronger.  Where Did Mommy's Superpowers Go? was filed away.  At the time I had no idea that a year and a half later, I would be in just the right place at the right time to meet the perfect person, when I wasn't even looking, who would transform my little Word document into the beautiful, special story that I had envisioned.

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