Donate Life Day 2013: A Tale of Two Families

September 23,2010 A family in California is in the midst of a dark valley waiting for a much needed kidney/pancreas transplant for their father and husband. In Texas, another family is in the darkest journey of all, struggling through grief after the loss of a child.

That afternoon, while I was on Facebook, a link to a video was shared with me, I watched it and sat weeping. The Storch family from Texas meeting the recipient of their daughter Taylor's heart. In March they had donated their 13 year old daughter's organs after her death in a skiing accident. I anxiously awaited Marty's return home from work to watch the video together.

I will never forget sitting on our couch that afternoon, watching the video together and weeping. This family had lost their child and yet given a tremendous gift to others at the same time. It brought home the price that would be paid for Marty to live a new life. Our son Conner was almost 13 at the time, the same age that Taylor was when she died. It was just too close to home. During this time, Marty had been recently re-listed on the transplant after huge misunderstanding with doctors and we knew his time was coming near. It brought reality, so close to home. Four months later, Marty received a life saving Kidney/Pancreas transplant.

We found out her parents had started an organization to raise awareness for the need of registered donors. I started sharing their posts on social media as often as possible. Who does that? Lose a child, donate and give life and then starting a foundation? Todd and Tara Storch, that's who. These amazing people in the midst of dark grief gave so much. It inspired us with hope, they became our donor family in a way, donor's of hope. We don't know them but we feel such a kinship with them.



This week, I picked up the new book written by Todd and Tara sharing intimately their journey with losing Taylor, organ donation and the donor's stories themselves

I started reading yesterday afternoon after Marty and I came home from a Nephrologist appointment at the University of Tennessee. We were there to check on his new kidney and make sure everything is as it should be. We got a great report and that always makes me think of Jerry, his mom and the Storch family. Where would our family be without organ donation?

The second chapter of the book is a look into the life of the recipient of Taylor's Kidney and Pancreas. The chapter gave me the chills. It was an honest look into life before transplant of a Type 1 diabetic. If you ever want to know all of the things I've never shared, read this book. It shares in detail many scary experiences that Marty and I ourselves lived with low blood sugars and other things. I couldn't have written it better myself.

I couldn't put down this book and stayed up until 2:30 in the morning reading it. Our stories are so tightly interwoven in the dates. During the time they were grieving their daughter, we were in the darkest time of our lives. So many of the dates mentioned in the book that they were struggling, our family was struggling as well in a very different way. Something that really hit home, this is the journey of donor and recipient  We trade places in suffering. 

The pain of losing a loved one is forever, while the pain of waiting for transplant is temporary. Thankfully our family always had a good perspective on this. The minute we were told our donor was only 18 years old, the wait meant nothing to us. Our donor died in a horrible way but in his very last act on earth, he was a hero to a family of four.

We are so thankful for people like Todd and Tara. Our family tries to give back by supporting their foundation in any way we can. Today is Donate Life day but it also is Taylor's birthday, she would've been 17 years old today. Instead of wearing the traditional blue and green today, our family has chosen to wear Taylor blue in her honor.

Elizabeth, Marty ( Kidney/Pancreas recipient), Julie and Conner with love to the Storch family

Her life has impacted our lives in a huge way, we never knew her in life but in death she has given our family so much hope. Reading the book and hearing about her personality, she was very much like Conner and I as a person. She was the friend to the friendless, lover of the underdog and champion of the unseen. In her death, she has really changed so many lives and will continue changing lives as the years go on.

Please go out and buy Taylor's Gift the book, register to be a donor on the foundation's website: www.taylorsgift.org, buy a Taylor's gift shirt ( I love mine, you can see it on my Twitter avi and I also make a guest appearance wearing it on the Taylor's Gift site as well) or donate to the cause!

Thank you to everyone who has registered to be a donor, to the family's who've donated and never heard from the recipients, we thank you. To the families who've made the selfless choice to donate, thank you. Thank you Storch family for making a difference and helping to promote organ donation. To Debbie, our hero mom, we thank God for you and Jerry every single day.

A/N as you know, I am a Twitter/cycling Junkie. When I started my cycling twitter, I just so happened to become tweeps with Jonathan Finger one of the recipients of Taylor's kidneys.

Finding Purpose in the Pain Devotional and Giveaway

A while back, my friend Stacy from Finding Purpose in the Pain told us she would be writing an e-book devotional about her experience with chronic pain. I was inspired that she would take on such a huge task an idea that I've been toying with for a while now.

This week, her devotional has released on Amazon in e-book format. You can follow this link and buy it there, it is a great deal at only $3.99

I've known Stacy since March of 2003, we met in a prayer forum online. She was fresh out of college, I was a young mother of two. We bonded over our shared faith and grew into friends, eventually leading bible studies on that site for women around the world. 

During this time, I learned of Stacy's debilitating struggle with Fibromyalgia, it was hard to fathom this young twenty something girl, struggling with severe and chronic pain. We prayed together so many times for her to be healed. Her pain only got worse and worse as time went on.

In the opening of her book, she shares a candid moment that took my breath away. Her pain had grown to the point she was anguished. In the last year, she has gone off all of her medications and has been doing really well with essential oils. It has been amazing to see prayers answered and Stacy thriving.

This devotional helps anyone whose ever been in a tough place whether it be with pain or trials. She brings the focus back to God and his word. It is a great devotional for any one actually, whether you're struggling or not.

Stacy has agreed to give away a copy to one reader of Just Jules. Simply leave your name in the comments and I will use a random picker based on the number of comments.

The Floater

The floater floats around the room, talking to everyone gleaning little bits of conversation from here and there. Floaters notice the person in the corner, instead of walking past, the floater approaches them with confidence and ease. I am the floater.

I think it is safe to say, that I march to the beat of my own drum. When I titled my blog ''Just Jules", I meant every meaning of the saying. I am just me with no inclinations to conform to any patterns of this world, I just want to be the best me possible instead. Here's the thing, I know that I am different but I like being different!

Truthfully, it wasn't until I slammed into the adult world in my 20's that I started to realize that I was different. Socially I have tons of friends ( too many if you ask those closest to me, they have given up trying to keep up) and never thought that socially I was different.

It wasn't until I was in a small setting that I realized.........I don't like groups of friends. I am fine if you're in a group of friends, I just don't like the trying to fit into the group part. I am more happy to watch groups of friends do their thing but will never push to be a part of the group.  Once in my twenties, I tried to worm my way into a group of friends with disastrous results. Actually, I think the results aside from the bad parts were good for me. I then realized, I like being the floater.

As I started to talk with my high school friends as adults, I realized that I knew far more people than others. It was then that I realized the benefits of my floating ways, I get to know more people outside the scope of a circle and broaden my horizons. Maybe at one point, I was on the outside wall but instead decided that floating around worked better than standing around?

It's not always easy being the floater, sometimes I struggle with it. Especially when I see groups planning fun gatherings or meet ups. I am never one to invite myself and would rather miss out than doing so. We always have something to work on as humans and this is one thing I should work on. I always feel like a pest or beggar when I do, I really have no desire to be either of those.

Floating has brought me much happiness, many gems have come from dancing around the room unaware of the groups within. I meet so many wonderful people that way, talking, listening and sometimes scaling the walls of people who are socially uncomfortable. I prefer one on one conversation, I don't like having to talk over others. One of my acquaintences always tells me, " you're deep water'' and that is the truth. I prefer the heavy duty conversations. My odd sense of humor isn't the norm and is often lost on others, so I prefer to stay deep, I like deep and know it well.

 I truly doubt, that I will ever give up my floater ways and conform. I like being the floater even though, sometimes its hard. Really, I like doing my own thing which is often doing things with Marty and the kids instead of trying to do things with others. That's another blog for another day......

If you want to find me, I will be the one flitting and floating around. I am always easy to find!

One Boy Scout Mom's Wish!

My dear Twitter friend 1Lavishone has offered to help me out. I am suffering from a bit of writer's block, I am reading old blogs and trying to not repeat myself. Thankfully, she has hopped in and blogged about some of her most hilarious tweets this week. 1Lavish is a dear, she has been a rock for many of us the last few months and we love her dearly.

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So, this week I've been asked by my lovely friend Jules to share a few thoughts about things that I'm thinking about?

First, my son is in Boy Scouts which is a great thing. Except when my husband is out of town and I'm the one forced to go to the meetings. Let's just say, I'm pretty girly  I loathe camping and the idea of doing any of that outdoor hiking crap is just not appealing to me at all. Frankly, my idea of roughing it is watching black and white t.v. 

Anyway, I take my son to the meeting (after frantically packing his special backpack for inspection - but that's another story). We get there and one of the patrol mom's starts talking about something. I saw her lips move, but all I heard was a buzzing noise that went to the center of my brain and died there. All I could think of was PLEASE STOP TALKING.

 Now I'm sure she's a nice person, she's just infected with the Boy scout fever. Her excitement over the upcoming hike bordered on religious fervor. It was...unsettling.

I sat at this meeting thinking you know what would make this meeting better? Wine. Sadly there was no wine to be found. Or cake either. I spent a whole hour praying for wine and cake. Best news of the night came when hubs called from the airport saying he was ready to be picked up. We got in the car and floored that puppy!
I drove to the airport to pick up my husband. 

Which leads me to my next rant. People, if you are going to turn, USE YOUR SIGNAL. I don't have ESP and I have no idea if you are planning on turning. How about if you help a sister out her and let her know what the plan is? Honestly, almost nothing is more irksome than finding out someone has decided to turn at the last minute almost causing you to have an accident.

  I wish people who didn't use their turn signals could be shamed in some way into doing it. It would make the roads much safer and less irritating. This rant is in no way related to the rant about old people and stoners forgetting to turn their blinkers off. That's a story for another day......

Mother's Day Gift Idea

My friends at MailPix are giving my followers 40% off Photo Books in time for Mother's day. Be sure to order now and treat your mom to something special. Just click on the ad to get the discount, really easy and simple gift giving.

Happy! Happy! Happy!

 Lately this seems to be the words I hear more often than not.  No, I am not referring to Duck Dynasty, I am referring to comments people keep making to me.  Everyone keeps telling me, that I seem so happy and look so happy.  This move has been very good for us, we are very happy we moved and I guess it shows.
 We truly are "Happy!Happy! Happy!" as Uncle Si says.

Fourteen years ago, when we moved to Visalia,CA from the O.C.; I was so lonely and isolated, twenty-two years old and my first time away from family and home.  I cried nearly everyday for months on end though I had family nearby.  I missed my friends, my job, my family and the place I grew up. As the years went on, I made friends, got great jobs, learned to be happy in my surroundings and adapted.  It was so hard but worth the life change it brought about for me.

We lived a very rough, long stretch of life for many years.  My Grandparents passing away, then both parents struggling with health issues and ultimately Marty's renal failure and transplant.  We missed out on many years of living life while waiting for his transplant.  Our plan to move came about during his waiting period and gave us hope that we could start again.  It was the fuel that kept us going along with many prayers from our support system.

We agonized over leaving our family and friends once again.  This wasn't an easy decision and very unpopular with some close to us.  I spent many days crying after hearing how upset some were that we were moving.  It wasn't easy but we knew it was time to go.

As we were driving out of California, Lizzie turned to me and said, '' I feel like a weight has been lifted off my chest." and that is how we all felt.  We were following our dreams as a family, taking a chance and a leap of faith.

We are so happy to have made this move.  The overwhelming peace we feel is truly amazing, undescribable, and long awaited.  Truly for the first time in years, we are really living life in a big way.  We are meeting new friends, reconnecting with old friends and finding our way.  We love exploring the area and finding new treasures along the way.  We love our new little rental house, it is really nice and cozy.  Soon we plan on looking for our own home.

This week I talked to three of my SOH's Olga,Tammy, and Heather all in California.  They all said how amazed they were at everything happening.  I also had two surprise visits from Twitter friends at work this week; Mary, Jane and Jeff all stopped by and gave me hugs.  Next weekend I get to see my dear friend Kim in her beloved Pigeon Forge, a six year dream come true!  I haven't felt alone or isolated this move at all, so very different from the first time around,

Thanks for all of your support along the way.  The emails, phone calls, texts and tweets have kept me going and encouraged us.

Our family loves TN

My new friend Flavia

Happy C and E at Cades Cove

TN cousins sleepover!

From my front porch

Even Max is happy

E enjoying our front yard with the dogs

Confessions of a Messy Moose

I was a naughty, busy little girl, who was extremely curious and mischievous  In addition to those traits, I was extremely uncoordinated and clumsy. I ran into walls, fell and got hurt constantly....and we aren't talking your regular scrapes and bruises, we are talking gashes and stitches. This prompted my parents to start calling me "Messy Moose",( I was messy too, really messy) for most of my childhood.

My first accident was jumping on my parents waterbed at 18 months old, that led to stitches in my forehead. You can still see the scar when I laugh or make certain faces. Then there was the night at dinner, when I was sitting at my little wooden table next to the big table. I was pushing my chair back on the legs while eating and fell backwards, the issue was I had the fork in my mouth and stabbed myself in the back of the throat. I still remember my mom putting a towel to my face as blood came running out.


I put my cat in the refrigerator( they kept hearing him meow, I finally told them " I put him in the fwidgerator'') he never liked me again? I was only two, not sure what possessed me. I bit my sister when she came home from the hospital, I stole her bottle. I was a bad seed, a very bad seed.

There was also my childhood drinking problem, my Dad thought my mom was drinking wine all day and she kept denying it. Then they finally found me with the door pulled just so sitting on the bottom shelf drinking wine. Oh and did I mention the I had my first hangover at three, I guess that at my aunt's wedding, I went around picking up drinks off the tables. I told my mom the next day, ''Mommy, I have a fuzzy head." No wonder that I have never liked to drink, I cured myself of that.


Then I moved on to the harder stuff. One sunny Saturday morning, my parents were mowing the lawn and I was playing on the lawn. I thought the gasoline for the mower was lemonade and drank it, my Dad turned around just in time to see it. I don't remember getting my stomach pumped, I do remember Bernie giving me an Ernie doll after my hospital visit. Sadly, I didn't learn my lesson and drank kerosene from a little glass mouse oil burner months later. My parents always say, back then if CPS had been around, they would have been in big trouble.

I was a bit like Elmyra from Tiny Toons, I loved my animals sometimes too much. I accidently loved my guinea pig too hard and he died. I love the cat mentioned above, not sure why I did what I did. I loved my parakeet Duke, I thought giving him salted sunflower seeds would be a treat? I guess not.

They kept having my eyes tested and knew something wasn't quite right. Finally in elementary school they found out that I had under developed motor skills because I never crawled as a baby. I skipped the crawling and just walked. So I had to have therapy for under-defined motor skills during my elementary school years.....I was special indeed.

I have recently been asked about a picture that I included in my cousin Andy's birthday blog. It is a picture of me watching Andy blow out his candles with a head bandage on.

Well, there is a story and of course it involves me being clutzy. I had my childhood friend Christena over to visit one day after school, this was a big deal since my parents worked and I rarely got to bring friends home. We had just finished watching our favorite movie "Nadia" when my friend called us to come outside. I was running down the hallway to the staircase and tripped....putting my head through the wrought iron banister. My head was stuck and I had to have it pulled out of the bars. 

I split my lip in two and had a huge goose egg. The hospital said everything was fine, stitched my lip and sent me home. After my stitches were removed, they realized my head was still swollen and discovered a hematoma. I had cracked my skull and had bruising between my skull and skin. My sisters never ate grape jelly again because they watched them cut my head open to remove the hematoma! My head is still misshapen in that area.

It's a wonder that my parents survived my childhood! Mainly after that incident the worst I did was sprain my ankle yearly in my tween and teen years. Well, there was the one time when I jumped from a moving car and got pretty skinned up. I was mainly messy in those years, always spilling something on my clothes and the like. 

 I am still not graceful by any means but I don't get hurt often any longer. I am very neat however, I really detest messes and like order. People wonder where Conner got his curiosity and I always tell them it was my payback. My poor parents, I totally understand, I totally understand.

A/N After publishing this blog, many stories have been left out. My childhood friend Christena mentioned one in a comment on FB. In memory of her grandma Ilene, I must share:

Ilene was my babysitter one year in elementary school. After school one day,  Christena and I were in the kitchen. Her neighbor Lonnie called from his house for us to meet him at the bottom of Christena's backyard which was an orchard. I got so excited, that in my excitement I grabbed a whole bottle of dish soap and poured it in my hair. I needed to wash my hair before we saw Lonnie, or so I thought. Her grandma Ilene was so angry, it took her all afternoon to get the soap out of my very long, thick hair.  Christena has NEVER let me forget this story. I laugh so hard thinking about it still to this day.