A unicorn in rare form-w/cherry blossoms-one of my writing mascots 🙂

The month of February had me feeling like I moved backwards-and I don’t mean just a couple steps backwards. No, I’d say it’s more like giant leaps in reverse where my health and my writing were concerned. I’ve tried to do what I thought would help me, expecting one outcome and then it didn’t go the way I really thought it would/should(perhaps I’m a smidge of a control freak,yes?). Sometimes I can pick myself up and move forward. At other times, well, let’s just say crispy rice treats, chocolate, and a few muffled screams in the linen closet are the only remedy. February was definitely a month of  “other times”.

So, it’s fitting that last Wednesday was #RareDiseaseDay on the last day of February. Rare Diseases Europe (EURORDIS) and the Council of National Alliances began this movement in 2008(a leap year, which is also rare-hence the play on the name) to raise awareness and represent 30 million people affected by over 4,000 rare diseases worldwide.

Rare Disease Day in Hiroshima 2018

The United States began participating in 2009. In the U.S., a rare disease is defined as affecting fewer than 200,000 people. I’ve mentioned before that if there is a less than 1 percent chance of a medication side effect, then you can bet I will experience it. So, the fact that I have a rare disease like Reflex Sympathetic Dystrophy is probably not a surprise to most people who know me.

RSD is also known as Complex Regional Pain Syndrome (CRPS-or as I sometimes call it- “the craps” 😊). But since I’m old school and have lived with it for 17 years, I still refer to it as RSD.

The theme for this year’s Rare Disease Day is right up my alley-RESEARCH! Hopefully, by raising awareness that these 4,000 diseases exist – more funding will be made available, patients would get diagnosed earlier, and more clinical trials could begin to ease the symptoms or better yet, cure the rare disease!

I’ve had many, many, many visits with various doctors over the past 17 years. Most have been very compassionate and helpful. However, there were a few that insisted it was either “all in my head” or that “I’m a malingerer”. It seemed that if that physician hadn’t heard of RSD, then it didn’t exist. I would leave there thinking well, if it didn’t exist, how does that define me? If they wouldn’t take the time to learn about my symptoms, or about RSD- how could they possibly understand what the pain had taken away from me? I had become a shadow of my former self, and now they wanted to make me completely invisible.

However, since I’m more shall we say… experienced, I’m not as afraid of speaking and standing up for myself. I can look back and see that after the diagnosis, God blessed me with a different path. A path that has many wonderful new possibilities, but also can be quite rocky at times.

I have been stumbling along on the rocky path since my spinal procedure in October, I haven’t quite yet gotten back to my “normal” pain level. There have been issues with medication side effects early on and two weeks ago some new ones cropped up (perfect example of my less than 1%). These debilitating symptoms prevented me from doing anything but hurt, so I had to switch back to an older medicine that I knew I could tolerate(Warfarin), even though it meant routine blood tests and other accommodations. As they(whoever “they” are) say, sometimes newer is not always better.

Because of the newer side effects, I withdrew from a conference in early February, which I was really looking forward to speaking at/attending. It bothered me a lot because I hate giving in to the pain. I’m slowly getting some energy back and look forward to presenting for the first time at the South Carolina Association of School Librarians next week(March 16th 8:30am at the Hyatt Regency in Greenville, SC-for any SC school librarians who might be reading this) 😊

Recently, a few things helped me navigate my rocky path: two friends each gave me beautiful, timely devotionals, and I received a letter sent to me by a student in New York. I love getting snail mail and it was handwritten-a twofer! It wasn’t just that he read the book and liked it a lot (although I do take some pride in that-not gonna lie), but that he took the time to write me, and had discussed scenes from the book with his teacher that he found impactful.

I’m so very grateful for the rare gems sprinkled in between the jagged rocks that encourage me to continue striving so that I may be in rare form (in a good way) despite my pain.

I have some people in my life and there are also way too many people lately in the news that are dealing with an overload of rocks in their path, so I’m going to do my best to find ways to be that rare gem and maybe give them some inspiration knowing that they are being heard and are loved.

“We know that reading-and reading widely-helps breed empathy. We know that children find comfort in books. That they seek refuge in fiction and poetry. And we know that literacy skills are essential to helping people make sense of the world.” From LITERACY DAILY blog, if you would like resources on how literacy can help stop the hurting:  or  Letters to Parkland and Beyond.


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On The Road to Libraries, Book Festivals, and Pain Flares

It has been a whirlwind of a month since THE LAST CHERRY BLOSSOM(TLCB) was published (I just need to pause a moment here, because every time I realize I’m actually a published author, I get giddy and giggle-okay I can continue now) :). I’ve spent a lot of time doing guest blog posts, sending emails to various schools, book festivals, and submitting conference proposals.

And two weeks ago we took TLCB on the road to attend the Mid-South Book Festival held in Memphis, Tennessee.magic school bus

On our way to the Mid-South Book Festival, we stopped in a little town named Ripley. My very dear friend Robin, (well she is more like a member of my family now), arranged for me to do a signing and presentation at the Lauderdale County Library. I hadn’t seen her since my mom passed away nearly two years ago. It was my first time visiting Robin in Ripley and it was a visit long overdue. The town may have been small but the southern hospitality was tremendous. Every single person was so welcoming and excited for me and my book. It was a wonderful, albeit, much too quick visit.


The next day we headed to Memphis for the Mid-South Book Festival. Now, my mom was a huge Elvis fan. In fact, when she first discussed moving to NC, she wanted to know just how many hours away we were from Graceland! She became a fan when LOVE ME TENDER first debuted in Japan. She waited in a huge line with her Elvis shoe laces on her shoes, and then stayed all day and night to watch every single showing. So watching Elvis movies and listening to his music together were some of my fondest memories with her. But because it reminded me too much of her, I hadn’t listened to his music since she passed away.

But, knowing this, how could we be in Memphis and not visit Graceland? I had been having leg pain from the drive, and was walking slowly. However, there were many benches and the tour is not that long(Graceland is surprisingly small), so I got through it okay.img_20160921_185004944

My mom would have loved it there. I got teary eyed when I first heard one of her favorite Elvis songs, but it brought me happy memories of her singing along to it.

The next day was the Mid-South Book Festival. I participated in my first author panel(Yay!) I was extremely nervous. But I brought my entourage (my husband, my friend Robin and her daughter Katelyn) with me, so I’d have at least three people in the audience that knew me. 🙂 The three middle grade authors on the panel with me were fantastic.  The moderator asked questions that I could answer easily and sound like I knew what I was talking about. 🙂 A little over an hour later, I could relax and celebrate with an ice cream sundae. The only bummer was that my book was on backorder, so it couldn’t be sold at the festival. But it was on back order because the first printing sold out, so I can’t complain about that!


(with Barry Wolverton,Sonia Gensler, Alice Faye Duncan)

We drove back home on Sunday, and I spent the next 11 days in my room with a pain flare up. So I’m learning the valuable lesson of pacing myself. After 15 years with RSD you’d think I would have that pacing thing down pat. But, my type A personality tried to kick in again and it is a frustrating battle that I lose most of the time. This was definitely one of those times.

But while I was stuck in bed surrounded by crispy rice treat crumbs on my comforter, I spent some time researching various venues to market THE LAST CHERRY BLOSSOM. Right before I left for Memphis, I found out that I won the Honor Award for the Society of  Children’s Book Writers & Illustrators Book Launch Grant!! I was beyond ecstatic!celebration hooray pokemon yay

My hope is to present my mother’s story to various Japanese societies, schools, and nuclear disarmament organizations. Because of this grant I will be presenting to Peace Action Staten Island, and am working on a presentation date at the Japanese Embassy in Washington DC in the Spring! Between now and then I will be practicing my pacing skills. I’ve heard that crispy rice treats & a little chocolate really helps with that….