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Lydia ’s Story

Lydia "Liddy" Miyashita was diagnosed with AML (acute myeloid leukemia) in August 2008. She endured 2 rounds of induction chemo, but relapsed during a 3rd round of chemo. She earned her angel wings on February 24, 2009. Lydia's Hope was founded in March 2009.  http://www.lydiascancerhope.com.

My name is Lydia Li-mei Eiko Miyashita. I am 5 years old, and my birthday is July 3. I was born in Guangdong Province China and was adopted at age 1 by my parents Mark and Monica Miyashita. I have one brother, Maxwell ("Max") age 3, who was born in South Korea. I have a very international family as my Papa was born and grew up in Tokyo Japan. My Mama is the boring one of the family: she was born in Elyria Ohio and is part Buckeye, part Mountaineer.

I live in Orrville, Ohio, and go to Trinity United Methodist Church. I sure know and love Jesus and know that he is watching over me all the time. I love my cats, Sherlock, Agatha, and Daisy; my bicycle; my playhouse; going to Disneyworld; playing princess with my friends Samantha and Lyla; and going to Ring and Sing at Lakeside with my friend Madelyn and my brother Max. Someday I hope to go to London and Paris with my mom.

In August 2008, I was diagnosed with a pernicious and deadly form of cancer called AML (Acute Myeloid Leukemia). I did not achieve remission until after my second induction therapy, and then relapsed during my third round of chemotherapy. Dr. Li, one of my oncologists, found my birthparents and family in China, but because I was never able to achieve remission after my relapse, I never made it to my bone marrow transplant. My parents and grandparents took my to Florida to spend the last precious days of my life, where I danced, played, and swam with my brother Max and went to Disneyworld. I became an Angel on February 24, 2009 at 4:35 pm, and am now dancing in heaven with my godsister Hannah. If you check out the brightest star in the constellation Andromeda, you will see our star: the HannahLiddy star. Hannah and I are now watching over all children in need, as well as our families.

Love,

Lydia

***ALL JOURNAL ENTRIES CONTAINED HEREIN ARE COPYRIGHTED TO MONICA L. MIYASHITA, ESQ. (EXCLUDES GUESTBOOK)

Latest Journal Update

My Spiritual Journey

45 days ago I began a spiritual journey during the period of self reflection and self denial known to Christians as Lent.  Lent, for the last six years of my life , has been an especially poignant and reflective time,  as it was six years ago, on Fat Tuesday, the day which marks the beginning of Lent, when Lydia died.  I have struggled through this period for the last five years, sometimes giving up coffee or  chocolate, in an effort to wrap my brain around what kind of sacrifice God wants us to make during this time.  I have struggled for years to find out exactly what this spiritually significant time is supposed to mean for me. This year, after a series of politically controversial debates on social media about deeply held religious and political beliefs that threatened to fracture family and friend relationships, I decided it was time to go deep and really think about balance in my life, as well as the appropriate role of technology and social media in my life. And so my Lenten journey began: a time to be introspective, a time to contemplate, a time to re-connect personally instead of just online, and a time to reflect.   After 45 days in the Wilderness, a virtual Walden, what did I discover? I will list them as five key things, increasing in order of importance.

5.  Time.  I discovered just how much time I spend on social media or even just thinking about social media.  I discovered how much my ipad has become like another appendage in my life; something I seemingly cannot do without because of the connectivity to media, news and even Netflix that it provides.  I discovered that I have time to do other important things in life.  I read lots and lots of books.  I am always reading about ten books at any one time, but I discovered I can really fly through books when I am not distracted by other things.  And I discovered I digest them much better when I am not distracted and can fully immerse myself in them.  Facebook and other social media can become a huge time suck.  I noticed that when I went somewhere and wasn't otherwise engaged, instead of talking to people or reading a  book, I would immediately get out the iPad and start scrolling through Facebook, almost as time killer, and boy does it work!  Time passes by, minutes turn in to hours, and before you know it, a massive amount of time has been lost.  I say "lost" because unlike reading a book or actually talking with someone in person, I gained very little from what I was doing on Facebook.  I learned about someone's vacation, read a bunch of political stuff that got me fired up, and otherwise "wasted" time.  Occasionally, a meaningful moment may occur but these are most often fleeting and few and far between.

4.  Image.  I discovered that whether I was doing it consciously or not, I was crafting an image of myself on Facebook.  In social media, it is easy to portray an event or photo in a certain way so as to peddle a sort of image of oneself.  Like any photo, as I often tell the classes I teach, it is as much about what is outside of the line of sight as it is about what subject matter is included in the photo.  While we share vast amounts of information on Facebook, most of it is done to convey a certain image of ourselves, just by virtue of what we choose to share versus what we don't.  I discovered I don't actually like crafting an image of myself, especially when I consider myself a rather blunt, straightforward person.  It was disturbing to find out that I gave thought to what I was sharing and how it might be perceived, because ultimately, the image you see of me may not be the true self of people who actually know me.  This is an important cautionary tale to think about as adults and also as parents. 

3.  Sharing.  I discovered that what I share about myself online is much larger than what I share about myself inter-personally in real life.  People who know me very well know I don't shy away from discussing controversial or political and religious topics in person, but because such conversations take place in person where I can gauge someone's reactions and I am saying "face to face", I am more cognizant of how something is perceived.  And while I am blunt, I don't ever want to make someone feel bad, alienate someone, or hurt someone's feelings.  The ability to perceive nuance is just not present in social media and so I no longer feel that I want to engage in these discussions openly on Facebook as I don't want to be someone who hurts someone else just to score a debate point.  I never liked doing that as a lawyer, and I value people too highly to do this to friends and family, whether they are online friends or friends in real life.

2.  Balance.  I discovered that much like anything else in life, social media is something that requires balance.  Too much of a good thing quickly turns in to something addictive, destructive and bad.  And on the flip side, social media is a part of life in the 21st century and to turn your back on it completely when it provides so much connectivity with friends and family, far and near, doesn't make much sense either.  It is, like anything else, about learning to keep it in proper perspective and knowing when to just say "no" to: logging on; discussing things you won't change someone's mind about; or even sharing information that you would never share in a crowded room but are doing so electronically by sharing openly online.

1.  Nothing beats in person relationships.  As much as I enjoy relationships online and talking with friends far and near, nothing beats a one-on-one in person relationship.  If someone doesn't want to talk with or be friends with me in real life, then I am not sure why they want to do so online.  I think these relationships are probably confusing for everyone.  You see someone you are friends with on Facebook in real life, and there seems little "connection" there, which makes you wonder:  why am I friends with this person anyway, sharing my vacation pics and birthday photos.  Call me old-fashioned, dogmatic , or even an old curmudgeon, but sometimes Facebook makes us feel as though there is a connection when there really isn't one.  I long for the days of old-fashioned phone calls, letters, coffee chats and lunches.  I can have a political or religious discussion with practically anyone in real life, without it becoming an apocalyptic adventure, but part of that is because when you know someone, you know where his/her heart is, and you can get past the differences of opinion out of your regard for the person.  

What did I do during my Lenten retreat besides refrain from social media and read a lot of books?  I did the New York Times crossword puzzles; I did some cross-stitch; I did lots of yoga; I walked A LOT; I swam; I talked to and spent time with people without the distraction of social media in the background; I took photos without posting them anywhere (purely for my own enjoyment and for posterity!); I went to lots of concerts and sang in some myself; I worked and graded lots of papers; I played the piano and violin LOTS; I purchased a grown up coloring book based on an article I read in the New York Times and began the Zen activity of coloring; I did LOTS of origami; I read the Bible; I read writings of the Buddha; I read about Daoism; and I kept a handwritten journal documenting my journey to better enable myself to learn from this reflective time.

I come out of this time period spiritually and mentally refreshed, and ready to embrace a balanced relationship with social media and to be more cognizant of what and how I share information and viewpoints. I hope others who used this time to disconnect also found it to be a spiritually rewarding exercise.

Happy Easter to all celebrating, and thank you for continuing to follow Lydia's caring bridge page so long after she has been gone from this Earth.
Monica