Joshua's Ride For Riley

Joshua's Ride for Riley 2012

Sunday, June 24th
Carmel Cyclery Bicycle Shop
230 W. Carmel Drive
Just west of the Monon Trail on Carmel Drive
1:30 Adult Ride, Kids Activities, Live Music, Silent Auction, Bounce House
Carmel Fire Department, Food
2:15 Kids Ride
2:30 SNAKE HEAD ED
Silent Auction Items
-Jewelry from Distinctive Diamonds
-Autographed Tony Stewart Replica Helmet
-Hot Air Balloon Ride for Two
-Autographed Shoes from Tamika Catchings
-Kings Island Tickets
- And more!!!!
ADMISSION IS FREE, DONATIONS ACCEPTED. FREE T-SHIRT TO THE FIRST 125 PEOPLE WHO MAKE A DONATION THE DAY OF THE RIDE.

Joshua's Riley Urology Story

Joshua was born with a rare condition called Prune Belly Syndrome. Dr. Cain, from Riley Urology the day he was born, explained that the syndrome occurs in 1/40,000 live births and about 98% of them are boys. Prune Belly Syndrome is a congenital syndrome of the Urinary Tract System, characterized by a triad of symptoms. These include a partial or complete lack of Abdominal Muscles, undescended testicles and urinary tract abnormalities such as a very large bladder. He further explained that Joshua would be very susceptible to all kinds of infections, primarily Urinary Tract Infections, but that all types could cause problems. We were told to prepare to spend a lot of time in the hospital and he would have several surgeries. My wife and I will never forget the comforting words of Dr. Cain that night before he left, “Don’t worry about the future and the hurdles that will come, enjoy your child love him and take care him. When the hurdles do come, we will get you over them.” Riley has been here every step of the way and continues to support our family.

The Story Continues

Joshua developed the first of many Urinary Tract Infections and was taken to Surgery before he was a month old. Soon after that first surgery, he was transferred to the NICU at Riley. While there, he continued to grow and had one more trip to the operating room. The staff at Riley was wonderful and took good care of Joshua and comforted us in our time of desperation. From the doctors down to those in the Maintenance Department at Riley, understand that the patient's family has needs and they all rise to the occasion with empathy and sincerity.
Finally, on Christmas Eve, after almost 7 weeks in the NICU, we received the news that Joshua was ready to go home. Christmas was really a merry one for all of us, big brother Matthew got to meet his baby brother for the first time and the whole family was together for Christmas. Thank you Riley for the a Christmas we will never forget.
Joshua's Spirit Shines On
This is just the beginning our Joshua’s Riley Story and that story continues to be written with each appointment and test that is run and will continue to be written for many years to come. In March, 2010 Joshua was back at Riley for 2 ½ weeks with another Urinary Tract Infection and endured one more trips to the operating room. In September, it was 3 days with a minor infection and as this is being written we are preparing for another stay in Riley for more surgery. Recently, March 2011 he endured a 11 1/2 hour marathon surgery to fix his Urinary tract and do a tummy tuck so he has abdominal muscles in the right place and looks right. After his surgery, he spent 3 weeks in the hospital recovering. The amazing thing - he is the happiest child you will ever meet, with a smile that will break your heart. His spirit is a gift to everyone who meets him.

Why Riley Urology?

The 5 doctors in this practice are the only Pediatric Urology Specialists in the State of Indiana. They see close to 9,000 patients at all Indianapolis area hospitals and 5 clinics in outlying cities in Indiana. Led by doctors Richard Rink and Mark Cain, this practice has been rated #3 in the country by US News and World Report for the past 3 years, and are world renowned in the Urological community. Although ranked among World Leaders in Pediatric Urology, Riley Urology does not have a research fund or endowment of its own. The money raised will allow these doctors to continue their research and develop new treatments. 

No matter where you are located you can be a part of the fun and fundraising.  Donate at http://www.firstgiving.com/fundraiser/keith-krimmel-1/keithkrimmelsfundraisingpage and also feel connected with us here in Indy by doing a positive activity in honor of Joshua and his family as well as Riley Children's Hospital which serves hundreds of thousands of sick children. No amount is ever, ever to small to make a difference in a child's life, a family's life.

Donate your Happy Heart Beats at http://www.gtwyh.org/rileyurology/grouphome.asp.

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Participate by sharing your compassionate heartbeats.  All Riley Kids, in the hospital to those grown, like me feel stronger when the number climbs!  It makes the world a smaller place, connecting us all through our humanity, compassion for others all while doing positive activities to increase your overall happiness.



Badge of Honor

The month of June is declared "Riley Month."  What is Riley you say?  Riley Children's Hospital is in Indianapolis, IN with nearly 1400 sick beds, the most of any hospital in the country.  The reason June is so very special is because there is a fundraiser called Joshua's Ride for Riley on June 24th raising funds, awareness and fun for Riley Urology who saved the life of Joshua.

This month you will hear stories from Riley kids (like myself), parents and supporters to generate excitement for the wonderful loving care Riley Children's Hospital provides to thousands families a year. Of course we will not forget our Dad's that help make the world go around on Father's Day and be prepared for a special treat celebrating a Riley Dad.  You will understand why being called a "Riley Kid" is a badge of honor.

My Riley Story

Personally having grown up with a congenital spinal birth defect, I spent quality time at Riley enduring over 40 surgeries some as an adult, as well.  The journey is a continuous one for me, perhaps looking another surgery in the eyes in the very near future.  I'm 37 so I grew up with Riley.  Riley was a small hospital back in 1981 when my family moved here from Ohio.  The Urology department was in a hallway with only a couple exam rooms.  Within that very small space, however, were exceptional health care providers leading the way medically as a State of the Art department.  The nurses, doctors, medical students, residents eased the minds of the frightened children and parents.  Their empathy and concern helped distract parents and children from some painful procedures and at times news of major surgeries which would be scheduled.

Urology Department

I remember the tile floor.  It had multiple colors and I jumped from one color to another without stepping on the lines.  In the hallway, they had books and magazines too.  My Mom would engage me in "Highlights" magazine to keep me from being afraid.  And another favorite was, "Ranger Rick."  It was a basic set up with brilliant doctors who changed my life.  After many procedures over the years, they made me continent, and in that, confident as well!  Many of the Urological surgeries are life saving procedures no one thinks about.  Entire urinary tract are reconstructed to save a childrens' kidneys and lives.  It's truly phenomenal!

Thank Your Riley Urology for Making me Continent!

Orthopedics and Neurosurgery

Wow, I spent so much time in the Orthopaedics department as well.  Sacral Agenesis (my congenital spinal anamolie) is multi-faceted, impacting the body holistically.  In order to walk I have had many corrective procedures for bilateral club feet to straighten my feet and ankle fusions (surgically fuse the ankles at 90 degrees) and muscle shortenings and lengthenings and more. What I loved was my Doctor and the Nurses.  This department was around the corner (in the 1980's) with a small waiting room and several examining rooms. My doctor was so gregarious and confident.  I idolized him really.  Before surgeries he used marker to draw the bones on my legs and "diagram" what he was going to do so I could visualize the procedure.  It helped me become a part of the process, as a child.

Out of the Gates to Walk! 

Hospital Stays

There were many long hospital stays over the years. Before the hospital expanded to different wings per illness, siblings were not allowed to visit for fear of spreading germs to the immunocompromised patients.  I went long times where I missed my twin brother and older sister.  However, the nurses were so wonderful on the floor.  When I was able to get out of my bed, I would sit at the nurses station and could call my Mom.  I was quite grown up!  Even when I used the call button for the nurse, I made my request using proper medical terminology and very politely.  They tirelessly cared for all of the children!  To this day I still can picture some special nurses I've had over the years and am so thankful they came into my life.  To lift everyone's spirits, I would wear a clown nose and plastic Spock ears when the nurses came into my room.  I did this even when I was tired and in pain.  It put a smile on all of our faces and broke the tension.  If you don't laugh you cry.  And laughter is a great release!

College Years And Beyond

As I went to college and tried to "forget" my surgeries and all that I had been going through, I was abruptly reminded.  Suddenly I was unable to walk with indescribable pain.  Ironically enough, I had never had a spinal surgery my entire life until I was 21.  This is where Orthopedics and Neurology worked together in many surgeries.  My spinal canal collapsed on the spinal cord compressing it so much that it was damaging the cord and my ability to walk and other organ functions.  After my first Laminectomy (remove bone from around the spinal cord giving the cord room to swell without injury) it was wonderful.  Immediate relief and regaining of strength.  I had about 5 of those and then 5 tether cord releases where my neurosurgeon surgically corrects an abnormality with the nerve roots.  This keeps me out of pain and walking as well. 

Thank You Riley for Taking Care of Me. It makes me Happy!

What Can You Do? 

All Riley Kids grow up quickly seeing life and death as a child.  It molded me into an empathetic, independent, happy individual who wants to pay it forward and help other children and families struggling.  Join me in honoring Joshua's fight to live in just 4 short years.  He's endured many long, arduous surgeries at the hands of Dr. Cain and Dr. Rink at Riley Children's Hospital in Urology. 

Remember to engage in activities which make you happy and share the heart beats during that activity with Riley Kids.  It's sharing compassion that gives families hope when they see the number increase, knowing that so many people have done something positive in their honor.  The weather is nice now, if you want to bike ride, walk your dog, play Frisbee, or read, do yoga, spend time laughing with friends, volunteer.  Make doing positive activities a part of your daily life and it will become a habit.  Share that happiness with Riley Kids who can view that as a giant get well card from the world.  Log your Happy HeartBeats at http://www.gtwyh.org/rileyurology/grouphome.asp.

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Will you join me in generating excitement as Joshua's Ride For Riley approaches?  Spread the word.  You can log happy heartbeats wherever you are located by doing a  positive activity that day.  It will connect all of us.  Read Joshua's story at http://www.firstgiving.com/fundraiser/keith-krimmel-1/keithkrimmelsfundraisingpage to donate to Riley Urology who saved Joshua's life and gave his family hope!  This is one of many, many stories of survival at Riley including mine.

Penguin Kids Fitness - Inspiring Children to Be Active!

Hi and welcome to this guest blog by me, the creator and owner of Penguin Kids Fitness. Thanks to the amazing support of Julie and the Happy Heartbeats team, I have been invited to write this blog and thought I would take the opportunity to explain about the reasoning and inspiration behind the website and why there is such determination to see it grow and grow, plus be seen across the world by a large number of people.

First of all, my name is Stephen. I started the website for Penguin Kids Fitness in November 2011, and in order to be able to remember the date forever, launched on 11/11/11. It wasn’t quite 11:11am, but was incredibly close, so I can safely say that this special day will never be forgotten. The concept has evolved massively since the start and has gone from me setting out to teach classes across the UK to children to get them to be active, evolving into promoting people doing this and also promoting products as well as services to ensure all aspects of children’s welfare is now covered.

The website is now at a position where the purposes are strongly defined and I am working towards two main goals, which are the following:

1.  To promote products and services that benefit the health, fitness and wellbeing of children

2.  To engage with children to inspire and motivate them to take part in sport and physical activity

I have explained how the first element evolved, and I have seen positive reaction to promoting a wide range of products and services. This started with promoting businesses and organisations across the UK, but with the help of launching a French speaking version of the website, the website(s) now promote products and services which are international, as well as businesses and organisations nationally in UK, USA, France and Ireland. This is growing and there is now the clear aim to promote and be seen across the world, wholly aided by the fact that the main promotion and marketing is through Twitter and Facebook, which makes all of this possible.

The engagement side of the Penguin Kids Fitness business is done through two main aspects. Work is being done to create lots of resources for teachers which will help them to make PE more fun and get more kids engaged, inspired and motivated to take part in sport and physical activity. The other way that the site is engaging with children is to target them directly through the "Stuff for Kids" section Meet The Characters, which has seen the creation of a total of 24 Penguins, each one representing a different sport. A working progress, the eventual aim is for each penguin to have a profile, an interview with them plus more details on the sport they play and how kids can start playing that sport.

Play Hockey with Klaus!

There are other elements and areas on the "Stuff for Kids" section, and hopefully I have whetted your appetite to check out the site and find out what these other areas are. I feel I can say that you will discover even better things when you get there, and I hope that kids will walk away wanting to discover a new sport or take part in different activities.

Go Swimming With Karen!



The drive to create Penguin Kids Fitness has really come from wanting to make a real impact on the life of our younger generations, and to ensure that they get the most out of all the opportunities which now exist for them. As well as all these fantastic and motivating opportunities which would see kids running around and trying different activities, there seems to be an equal amount of opportunities which would actually prevent them from taking part in sport. Whether the various distractions of television, computer games and computer activities, or the need for them to do lots and lots of work in subjects for school, the main thing that now lacks in a child’s life is the ability to run around, be free and burn energy. I know I am not alone in being worried that this could have a very bad effect on their lives, especially as the habits we develop later in life are founded upon the habits we teach ourselves as a child. As a result, it is really important that we get our children to run around more and take part in sport and physical activity, as this means they will be more likely to take part in sport or go out running when they are older, thinking of this as natural.

Go Cycling With Fabienne!

I think that just about explains why and what the Penguin Kids Fitness website is all about. What started as a website which I thought would be seen by a few people has grown to something that is now seen around the world, and it is quite nice to think about this. The steady growth of the website and support has been really positive, and I am looking forward to it growing more and more as the site is developed with the number of resources that are available for parents, teachers and children.

If you have not yet seen the website, you can check it out at www.penguinkidsfitness.com. To stay up to date with all updates and see when new links and resources arrive on the website, follow/like us on twitter (our profile is @PenguinKidsFit) or on Facebook (our page is www.facebook.com/PenguinKidsFitness).

Have Penquin Fun!!

Children will Love Playing Along Side the Penquin Characters!

Please feel free to contact us is you have any questions you want answered. The contact details are on the website, or you can use the contact forms and they will come through to me.

I hope you have enjoyed this guest blog. I would like to take this opportunity to thank Julie for giving me the opportunity, and hope you keep following her blog to follow the fantastic work and inspiration she provides through the Happy Heartbeats Counters (I support and follow her, and there is a link to her blog on the Penguin Kids Fitness website).

I hope you all have a good week.

Thanks, Stephen

Disclaimer

When Saying Thank You Isn't Enough...

In this Happy HeartBeats blog we naturally discuss finding happiness and feeding our souls with positivity, then sharing that with others; a pay it forward system.  There are times when being on the receiving end of the compassion is extremely overwhelming.  What do we do when there are no words to thank those around us for giving so much? 

Recently I've been struggling with a Cerebral Spinal Fluid leak.  I fell about two weeks ago, sustaining a significant concussion.  I have not been myself or able to write and share/motivate those around me.  It's been terribly lonely and terrifying.  My husband has been lovingly at my side to calm me from the cognitive side effects, confusion, agitation, ringing in the ears, nausea etc.  He is ALWAYS here!  My parents always come to bring food, even more than they had been.  Without their help, the stress would be so much more overwhelming.

Talk about sharing happiness and compassion with others!  I am surrounded by a family and some friends who never leave my side, no matter what medical challenge comes my way.  I know, or think I remember being so weird to talk to because of the confusion and agitation.  Yet, they all remained here, loving me.  I found out just today, from the tests, that I sustained just soft tissue damage in my head, neck and lower back where the CSF leak.  For me that is excellent news considering what could have happened.  A definite silver lining in light of a scary fall.  I did find my humor by posting a song the other day on Face Book.  That's my thing.  I usually like to post songs to fill peoples' days with humor or inspiration instead of talking about myself.  I posted the song, "If I Only Had a Brain," from the musical The Wizard of Oz because I was so frustrated from not being able to think clearly.  I'm still struggling but the old me is coming back :).

Loving Family!

 

The thing is, that those who love so freely and share their hearts openly are around all of us.  It's also allowing and accepting that compassion and love.  I still don't know how to thank everyone who stands by me still.  There are no words to do justice to that type of sharing. That's what Happy HeartBeats is all about.  It's important when you are on the receiving end and are down in the dumps to cherish the people in your life who really comprehend compassion and empathy.  These are virtues not many possess but so many of us are lucky to receive.  Interesting statistic.  Hold them close to your heart and remember...always pay it forward.  We thank those who are here for us every day, our significant others, children, parents, siblings, grand parents, animals etcetra but to do their actions justice, we must share the same type of love, joy and compassion with others.  This completes the circle and makes our world a loving place.  It's not a thing for dreamers.  I am living proof and if it weren't for everyone around me who have chosen to love me, for me, and despite me, that I smile and can share it, and hopefully inspire!

True Blue Friend!

Saying thank you seems trite in light of the good deeds of others.  Then there are others committed to going another step.  They give themselves wholey to charities and causes close to their hearts.  We're not able to have children due to health issues but growing up a Riley Kid, I identify with the struggles of being a child at Riley Children's Hospital.  Being in the loving hands of the staff, from doctors to food service who enter the room with love and a smile.  They not what their empathy means to the entire family.  Well, for my husband and I, those kids, the Riley Kids are our kids!  Please pay it forward, in your life, and share with  those at Riley Children's Hospital http://www.gtwyh.org/rileyurology/grouphome.asp .  It's free and takes just 60 seconds to give hope and inspiration to those who need a lift from others. 

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Compassion is a virtue which needs to be passed onto others so those on the receiving end experience true empathy and are able to share it with others.  Will you join me in thanking those around us, in the only way that truly does justice to who and what they are?

Be prepared for an amazing guest blogger for the following entry.  If I told you who it was I'd be sharing too much.  Stay tuned...

Silver Lining

Happiness, true happiness, makes my soul flurry with excitement and dance with glee.  I've had a tough time lately with a Cerebral Spinal Fluid leak keeping me on bed rest - almost in my 4th month.  I have a very positive outlook which keeps my eye on the prize, recovery and enjoying the outdoors again.  To let you in on a secret, yes, I am "Happy Julie," accomplished because of my faith, family, friends and beloved pup Stella. 

Stella, The Grand-pup!

Please Don't Leave Grandpa!!

What I'd like to tell you about now is the happiness I find, in each day, right now.  Sure, it's a little dreary, black out curtains, and only able to get up to use the restroom and let the dog out and get a drink.  I always say...there is a silver lining in every situation. It may be tarnished but it's there.  My silver lining is obvious, consistent and loves me unconditionally - my Dad.  He comes over at noon, on the nose, every day to make me lunch so I can stay in bed.  For almost 4 months now, my Dad and I have had one on one time just us and, of course Stella!  We talk and I've opened up in ways I never had done before with my Dad.  I never chattered and babbled assuming he didn't want to hear it.  I even apologized and he said, "Did it ever occur to you, I would like to hear you 'chatter?'  I don't know if he'll ever know what that meant to me.  He's had to listen to me cry, hand me kleenex after kleenex and really be there for me in ways he's not had to in the past. He gives excellent advice!

My Dad and Silver Lining!

I look forward to lunch everyday with you :)  I love YOU!

Let's face it, it's stereotypically Mom's job right?  If I cried I went to Mom.  If a boy dumped me, I went to Mom.  It's just natural.  Mom and I are best friends.  Our relationship is so close because of our unique situation. I can remember when I was little and I'd cry.  If my Mom wasn't home, my Dad looked like a deer in head lights and would offer ice cream.  It did work.  But now it's different.  We talk back and forth about how he is doing and what has going on in his day and how I'm managing.  He judges my symptoms by how I act and really, really takes care of me.  He's my silver lining and I smile just thinking of tomorrow's lunch with Dad!  We do daily devotionals together too.  We are bonding on such an adult level and it's just been so fantastic.  If I didn't have this leak, I would not have gotten this chance to know my Dad the way I have.

The time I share with my Dad, I log as Happy HeartBeats.  Happiness, for me, is not what I can accomplish physically outside but what I accomplish, in time with my Dad, or a wonderful talk with my best friend and day dreaming.  I think it's important to define happiness for each person.  I remember gardening, cooking, sailing, playing outside with Stella but for now fun is defined differently.  Friday night has and always will be Pizza Night for us and it's really become our date night.  Oh we live for the next netflix movie or we save all the recorded TV to watch Friday night.  It's together time because my husband has to do so much more around the house, cook, clean, do laundry and work more than full time.  He's the man of ALL men!

So when you are engaging in your happy activities remember they don't have to be formal exercise triathlons (although that applies), they really are individual to everyone. For me I can't wait to have lunch with my Dad and talk.  He knows I love walnuts and he always brings trail mix and picks out the walnuts for me and puts them on my night stand.  It's loving and endearing.  I think I was always hard on my Dad because he teased me so much.  I took him too seriously and now I know it. 
I will cherish the moments he threw me in our swimming pool, gently tugged my pony tail, teased me lovingly and smile!

I see how he looks at me now and, on my bad days, I see that deer in the head light look like before, but now he steps up and takes control with advice or listening; he gauges what I need.  He wins the prize!!  Thank you Dad for being here for me and Stella.  We love every day we spend with you!
So remember, each day when you do something that makes you happy share your Happy HeartBeats with Riley Kids, like me at http://www.gtwyh.org/rileyurology/grouphome.asp.  We all need your love and support!  Thinking of others being happy makes me smile and I know when that number increases each day, it's because someone shared their smile with me.  I share mine with you, always!!

Thank You Smile from Julie, Riley Kid :)

Your Happiness, Love & Compassion always mean the world no matter how old we are!

What Makes You Happy?

As Happy HeartBeats Ambassador and Spokes Person comes much responsibility.  Happy HeartBeats empowers YOU to become more happy and engaged in life and share that with Riley Kids. None of us know when the next "speed bump" that will develop but with the compassion you share, we know we have so many loving people giving us strength and hope.

So what makes you happy? What leaves you with a smile that comes from within and shows on your beautiful face?  Is it dancing, walking, doing puzzles, reading, doing yoga, meditation, prayer, playing with your children, volunteering, date night, going out with friends you haven't seen in a while, vacation etc?  It is different for everyone. I feel a responsibility to ensure YOU find happiness from within.  As an exercise, let me know what activities give you a lift.  Let's get interactive here. When we identify those things which make you happy, you will want to do them over and over again. 

Julie and Hubby, Mark Sailing for Happy HeartBeats!

Sharing Our Happy HeartBeats Gives Even More Meaning to What We Love!

Share your Happy HeartBeats at http://www.gtwyh.org/rileyurology/grouphome.asp with Riley Kids. You will find your outlook on life changes. Instead of forcing on the negative news, you will be able to watch it once, take it in, and go on with your day.  It doesn't mean we forget what happens in the world. Happy HeartBeats make the world a smaller place connecting us together though shared Happy HeartBeats.  The number represents all of us contributing our Happy HeartBeats while doing what makes us happy.  How wonderful to know that many others were doing something in any given day that you were, then share those who need it most.  We don't know from where those HeartBeats originate, but we do know that we are connected with others around the world for one common interest, sharing our happiness with others.

Something has been tugging at my heart strings for a while that I'd like to share. Being Spokes Person for Happy HeartBeats is truly an honor. Sharing happiness echoes what Happy HeartBeats empowers us all to do. As those who face any challenges, I'm sure you've probably surmised it's not always been sunshine and roses growing up with a birth defect and having so many surgeries, with a continuing journey. Being happy isn't about wearing a smile to convince yourself you're happy.  Happiness is being authentic and honestly representing yourself.  For example, I do have my bad days.  It's normal and natural.  I even sometimes get grumpy :)  For me, it's been important to be able to just verbalize, "Today is a bad pain day," or recognize what struggles I'm facing.  It's taken many years to realize it's not complaining, rather it's being fair to those around me to be honest about what I'm feeling.  We cannot expect others to read our minds.  It will get lonely not opening up to others.

In college I realized that I couldn't just pretend any of "this" was happening to me, life with Sacral Agenesis.  You'd think my first clue would have been having more surgeries than I am old but I'm really head strong.  I wanted to think that I could do anything and push through whatever pain there was.  Well, when I was a junior in college I was put in a wheelchair and, at the time, they said "forever."  I freaked out.  It really took until I was 21 to actually accept that what I had been living was extraordinarily different than most.  Now I use my really cool wheel chair for distances and walk in the house and sometimes use my walker when I go out, depending on my energy.  I learned that pushing through was only going to hurt ME, physically.  My whole life I was no different than others, as far as I could see.  Life is about adaption and that's what I do very naturally.  We can still achieve what we set our minds to, we just take different paths to reach the finish line. It was the year I will never forget because I started opening up and sharing my feelings.

It's wonderful to be happy and comfortable with where I am, in life.  I do believe there is a silver lining in everything, even on days it's most difficult to see.  It will show itself.  Sure, maybe it needs to polished, but it's there. I realize that in order to be the best Spokes Person leading others to find what makes them happy, I needed to share what I've learned. Life's journey is bumpy with detours and winding roads.  It's important to roll down the windows, let the wind blow through your hair and sing along to what's on the radio. With the "speed bumps" life places in our path, doesn't it feel better to have someone or some way to cope. Armed with people, activities or moments that bring our soul joy ensures we always take the exit to optimism.  

Here we are full circle.  What makes YOU happy!! I look forward to hearing what those activities are.  It's nice to know we are not alone in life and Happy HeartBeats provides a hypothetical journal of activities leading us to innate happiness.  Comment on the blog to share your activities in life that bring you happiness.  It's getting back to the basics in a hectic world.  Isn't it so neat that the world is a community built on happy experiences shared with each other?  I look forward to hearing from you this week.  Also if it's difficult to leave a comment, email me at hemkerjulie@gmail.com to share your happy activities.  Let's shake things up!

My Friend Walks Her Dogs and Shares Her and Their Happy HeartBeats to Riley Kids!

Thank you for sharing your compassion and motivating others to get involved!!

What is "Normal" Anway?

Thinking back on the past week so much has happened! There is one thing I keep thinking about...what is "normal?"  There is no real "normal" or we would all be the same. I've contimplated living this life as a very, very proud Riley Kid and how everything always seemed "normal" and ordinary.  Now suddenly it appears to others it's not so ordinary and hopefully inspires and gives hope.  That truly humbles me. 

Honestly my family and I never had round table talks about what was going on surgery, after surgery, after surgery, all the time missed from school, prescious time away from my siblings etc. We just made it through day by day as does everyone. What was "normal" for us was survival.

Happy HeartBeats has allowed me the opportunity to blog, which has sparked conversations with my family.  We are re-discovering one another in such a different light. My sister and I have started talking about what we all experienced.  It's great that my parents always enstilled confidence, in my siblings, that I would be okay to minimize their stress.  Now as I've gotten older and continue to hit "speed bumps" which knock me down, my siblings worry more (because they uderstand more), but they always know I'll get back up again.  I always made it through some really tedious surgeries but with the expertise of skilled Riley surgeons and their loving care.

 Last week's guest blogger, my Mom, was fantastic.  Her words are so  heart warming.  To hear her story and what my parents were doing , to maintain "balance" within our family unit to ensure none of us experienced hard ship is amazing.  My parents are even more heroes.  Like wise, my Mom hears what I've experienced now, in this blog and learns more about me.  It's bringing us even closer.  My Mom and I have a unique and very close relationship.  She was my rock and is my hero.  

Life for my twin brother Charlie and I was amazing. We played each day until sun down. We enjoyed running and engaging in creative play, going on "adventures" in the creek behind our house.  With Charlie, I was never different.  If the rocks weren't close enough for me to get across the creek, he innately placed extras for me to step on to cross without falling.  He still calls to check on me and he will always have my back!

Looking back, our family life was so ordinary.  We had a pool and all the kids hung out at our house.  It was so fun. I rode dirt bikes with the guys as I was the only girl our age in the neighborhood.  I was a classic tom boy.  I got more dirty than Charlie did and we wrestled and played so hard. In the summer, my brother, sister and I rode our bikes to swim team in the morning and then back home to do chores, then play, then back to swim team.  In the winterwe did swim team and weekend meets.  We were all three competitive swimmers.  This was great since it's what kept me walking and strong. I do remember swimming in the next level up because I was a really fast for my age group.  We would all step on our diving blocks, check each other out and all the girls would look at me as if to say, "Oh she's so tiny, there's no way she'll win."  I loved this because I knew that yes, I was very tiny but very fast.  So winning was a little lesson to not judge by appearences. 

In the hospital, I missed many days of school.  They had teachers, so if you could get out of bed you had to go to "school" on the floor.  The teacher taught what was sent from each child's school. I never had tudors.  School was my outlet. I studied and always excelled in education. It was my "thing."  I always wanted to be accomplished and well read like the doctors treating me.  Perhaps, I dreamed, I could help someone else one day like these doctors, residents, nurses etc. were doing for me.

Then there were all my doctor's appointments.  When I'd have my annual Urology exams my "token", if you will, was the huge syringe they used to inject the dye into my arm for the X-Ray study of my kidneys.   This was always exciting for me because I just thought about the distance those syringes got in family water fights.  So I made it through the painful tests, each year, thinking of who I was going to nail with water.  I still cannot be trusted near a water source.  My husband has learned this a couple times and always believes me when I say, "Okay, I'm done, let me just put down the hose."  Bam, I nail him in the face with full on water from the hose and since I can't run I get nailed but I LOVE water.  It's so fun. Our dog gets excited and we are all belly laughing! Laughter is the best outlet.

So...talking about the surgeries and what it was like isn't as easy as one would think.  Perhaps it's an acceptance of my Sacral Agenesis and owning, "I've been through a bit in my life."  Acceptance is an odd thing.  What I'm learning is that it's not admitting defeat because I have limitations.  Everyone has some kind of limitations.  What I do know is that I don't ever want to be considered "normal."  It's our differences that make relationships and life richer.

I am thankful for this life however ordinary or extraordinary it is.  Like I've said, my medical journey continues.  I have some chllenges right now, a Cerebral Spinal Fluid Leak and a Urology complication (not nearly as fun as the panty cake but hey maybe we'll have a party just cause)!  That's the way my family is. Celebrate everything you can since each moment is a gift, even when it's so hard to see the light at all.  For me, looking back on what I have over come gives me strength to get through current challenges.

Thank you Happy HeartBeats for allowing me the opportunity to be a part of a movement enstilling happiness and hope in others.  Happy HeartBeats inspires me to continue finding joy each day and sharing it with Riley Urology Kids (oh yea, that's me)!  As the number increases in the Happy HeartBeats Counter™ for Riley Urology Kids each day, it brings me hope and strength, even now at 37!  Continue counting your Happy HeartBeats for the countless families facing medical challenges and for me.  You ARE making a difference for so many families.  Thank you!!  Upload your Happy HeartBeats at http://www.gtwyh.org/rileyurology/grouphome.asp.  Continue making financial donations to Riley Urology, whatever your heart tells you, at http://www.gtwyh.org/rileyurology/grouphome.asp.

When you see a Riley Kid, you see a smile of strength, fortitude and hope!  It inspires.  Be the reason one more of us smiles :)  Your happiness means so much to us as well!  Enjoy engaging in positive, happy activity so we can share our positivity with others.

Give us all the chance to grow up and experience this:

June 3, 2000 Happies Day of my Life!

Thank You Riley for always taking care of me and getting me to this day and beyond!!

Happy HeartBeats Why and How?

So, What are Happy HeartBeats?

A means for you to experience and engage with life in a positive way.  It decreases anxiety, leaving YOU happier and healthier.  Increase your quality of life. It's simple and free!

Activities for Happy HeartBeats:
*  Walking
*  Play Board Games
*  Family Night
*  Watch Your Favorite Movie
*  Listen to Music
*  Meditate
*  Pray
*  Eat Healthy
*  Walking your dog, take care of a baby (any activities caring for others you double your Happy HeartBeats because you are responsible for someone else's happiness!)
*  Enjoy the night sky
*  Enjoy the sunrise with cup of coffee
*  Hold hands with someone you love
*  Kiss in the rain
*  Whatever activity makes YOU happy and feel positive

Enjoy those activities that make you feel like you are in another world.  Scientific data supports that over time your heart beat will regulate to a more consistent pulse, and you will naturally find yourself doing those activities with repetition, inherently enjoying the activites which may have once seemed forced.  Happiness starts with YOU!  Once you experience joy that makes your soul dance with excitement and delight you will want to share that with others in need.

How Does Happy HeartBeats Work?

Estimate how many times your heart beats per minute.  For simplicity sake, let's say that your heart beats 100x/min x 60 min ( of activity) = 6,000 Happy HeartBeats.  How exciting, you just did an hour of activity that benefits you directly.  Endorphins are released in your brain and you feel, well, happy!  Now click on http://www.gtwyh.org/rileyurology/grouphome.asp where you login in the upper right hand corner (where the red banner is) and it says, "Are you a member yet?"  and "Login." You do not enter any personal data at all.  Just enter the Username and Password.

Username:  on
Password:   tap

This gives you access to the Happy HeartBeats Counter for Riley Kids Urology.  Here is where your Happy HeartBeats from doing a positive activity can help someone else.  Enter the number you "earned" and deposit it into the "bank" of Happy HeartBeats for Riley Kids Urology.  This number indicates how many positive activities were completed to share happiness and well being with those who need it most - our kids. 

Why Riley Urology?

Riley Hospital for Children has a World Renowned Urology Department.  It is the single most efficiently and effectively run clinic at the hospital and is serving as a model for all other clinics hospital wide.  Show them how much EVERYONE cares by sharing your daily Happy HeartBeats. The clinic over flowing with compassionate care givers and immense medical expertise needs our help to save kids.  "They" say, you can tell a lot about a society by how they treat their children.  Let's go down in history as a society who cares deeply, from the heart, for our kids.  Connect emotionally through sharing your Happy HeartBeats to show the kids, families, and medical staff they are not forgotten. Share your love to uplift those facing major battles every minute.  Riley Urology changes and saves lives.  Let's hold their hands and help them continue to do what they do.

Remember it's simple go to http://www.gtwyh.org/rileyurology/grouphome.asp The Happy HeartBeats Counter ™ for Riley Kids Urology.  Log in at the top in the red banner where it says, "Are you a Member?" and  "Login."  Click Login.

Username:  on
Password:   tap

Start today and donate 10000 Happy HeartBeats each day to empower those who need you! You make the difference.

What if I want to do more in conjuction with my Happy HeartBeats?

To continue building State of the Art treatments in Pediatric Urology including Oncology donate now at http://www.firstgiving.com/fundraiser/HappyJulieHemker/juliehemkersfundraisingpage.  With a compassionate heart filled, giving of any level helps Riley Urology obtain goals to increase their scope of treatments and expand research to develop new life saving procedures. 

So many lives have been changed and saved because of Riley Urology including my own life.  Riley Urology needs the emotional support from all of us and financial support to continue to soar as the Best!!

From Pampers to Panties

Hi!  I am Julie, proud to be a Riley Kid!  I was born with Complete Sacral Agenesis, a rare congenital neural tube birth defect where I am missing my entire sacrum and L5 of the spinal column.  This disorder manifests itself globally, impacting Urological, Neurological, Orthopedic function and more. Because I lack the nerve intervention from the waist down, I was incontinent until age 7.  Riley has always been an innovative leader in medicine and The Urology department is no exception.  At age 7, they implanted a new, at the time device, the Artificial Urinary Sphincter to control my bladder.  It required a couple surgeries to implant and I was the youngest during those early years to receive one.  It was wonderful.  I was dry!!!  I was able to wear "undies" like everyone else!!  We even had a "Panty Party" with a cake made in the shape of “undies” and I was so proud!  Over the years to follow it was replaced and several times and finally removed about 5 years ago.

Also I had a bladder augmentation when I was 13.  This is a reconstructive surgery where they used my intestines to enlarge my bladder so I could have normal bladder capacity since I was my bladder never developed beyond infant size. Again my life was changed completely!  I also have a neurogenic bladder where I live with painful spasms and pay close attention to completely empty so that my kidneys stay healthy while Riley Urology monitors this situation to keep me healthy.

Without Riley Urology's medical expertise, support and love I would not be the woman I am today. Countless other children would not have stories to tell because of treatment received from the Riley Urology team.  Riley Urology changes lives and gives freedom to children and their families. Thank you for holding me in your hand as you do each child you see! Sacral Agenesis has other medical implications. I grew up at Riley, having over 40 surgeries. My commitment to Riley is life-long as is my medical journey. Knowing what I have survived at Riley and also seeing the realities of life at a young age gives me the courage, strength and positivity to take on every challenge as an opportunity!

Be a part of the Riley family by supporting Riley Urology with a donation as well as uploading Happy HeartBeats to the Riley Urology Happy HeartBeats Counter™.  Riley Urology needs your help to continue saving our children. Share your financial donations at: http://www.firstgiving.com/fundraiser/HappyJulieHemker/juliehemkersfundraisingpage. Remember to share your Happy HeartBeats of compassion at: http://www.gtwyh.org/rileyurology/grouphome.asp.  Every Riley Kid needs to know they are loved by many.  Seeing the number climb as you engage in happy, healthy activities and sharing those Happy HeartBeats with us, empowers us to tackle the next obstacle knowing we have a "bank" of positive thoughts to energize us for each subsequent challenge.  It's a life long battle as is your happiness.  Sharing that happiness with Riley Urology Kids is a win/win where you become happier as do the kids with whom you share your Happy HeartBeats.

From Pampers to Panties thanks to Riley Urology!

Me smiling at my very own "Panty Party!" Thanks Mom, you always know what to do and say!

Emotional Disaster Relief

What is the Organization, Happy HeartBeats Counter™ anyway? Does it sound conceptual or like dreamers with a nice idea? I'll tell you what WE are. We provide the only digital outlet for the world to gather their Happy HeartBeats while engaging in positive activity and uploading them to our many different counters. "Why," you say?

Let's look at this past week for the mid section of the country. Devastating tornadoes ripped across our heart land destroying everything in their paths.  One of the largest storm of tornadoes in the history with 95 confirmed tornado touchdowns has left countless survivors with with tattered lives, loved ones lost and extreme loss of happiness especially the children.

Now, let's look at how a Happy HeartBeats Counter™ has meaning. Combined with efforts through The American Red Cross, Salvation Army, WISH TV8 and many more, Happy HeartBeats offers emotional support to the survivors rebuilding their lives. When they see the number of HeartBeats increasing daily their sense of hope rises. Financial donations are obvious, right?!!  The thousands of people on the front lines handing out food, water and tooth paste, setting up shelters, providing counseling to the survivors also need our love and support to get an emotional boost from around the world. Now taking that hour bike ride, meditating, reading a book, walking your dog and estimating those Happy HeartBeats, uploading them to the Happy HeartBeats Counter™ has purpose and value.

Our journey has many different paths as does life. Let's take "The Road Less Travelled" and be the positive change people need. Upload your Happy HeartBeats of compassion to tornado survivors now.  Each day share 10,000 Happy HeartBeats.  As in any tragedy, the immediate response is generous and overwhelming. Let's continue to support our neighbors who have lost everything. As we sit in our homes, watching T.V., planning meals for the week, finishing the chores, take one minute to share your Happy HeartBeats to those who are sleeping in shelters with only the clothes on their back.  They need US. 

We still feel a yearning to give more, share our empathy and concern.They need a huge group hug.  Hugs say what words cannot. It's another way to give to our friends in need.  Upload your Happy HeartBeats at http://www.gtwyh.org/tornadosurvivors/grouphome.asp  to show how much your care and let the survivors and volunteers know that we are not going anywhere. Let's stay together until the happiness to all returns. We are the Emotional Disaster Relief effort.  Combined with support from schools, congregations, businesses, corporate staff, and caring people like you let's start with tens of thousands of Happy HeartBeats on behalf of the tornado survivors and watch the number grow.

Follow #JuliesTornadoHug on Twitter.

Game On

What does it take to fall in love? To find a new friend? To help a lost dog wandering on the side of the street, running scared?  Compassion and gusto.

I’m a 37 year old Riley Kid, a term proudly given to those of us who were treated at Riley Children’s Hospital in Indianapolis, IN.  It’s like a badge of honor really to wear with pride.  I have a rare spinal birth defect which resulted in, thus far, over 40 major surgeries and 7 spinal punctures.  Not every day is easy or good but what matters is that I am here.  Here to share life with my husband of 12 years, my family, friends, and our sweet dog Stella. Growing up in a Children’s Hospital is a quick way to learn the realities of life and death.  Every second I'm blessed with a heart filled with love and happiness to share, I do!  I do it humbly for those who were not given that chance.  I treasure having been their roommates for what time we shared.  They are my special angels watching over me.

I’m no more special or important than anyone else. With my name comes a story.  A story to remember and make it easier to know that you are not alone in taking on new challenges, reaching out to new people, giving to others, etcetera.

As the Ambassador for Happy HeartBeats Counter, I gather love and gratitude for children and adults facing medical challenges.  Unleash your compassion and help.  It’s so simple.  Engage in healthy, positive activities in your day.  Estimate your Happy HeartBeats based on 100 HeartBeats for every minute of positive daily activity.  Upload that number to the counter.  Donate at www.gtwyh.org or one of our other city, family or charity Happy HeartBeats Counters. This number reflects the amount of Happy HeartBeats people around the entire world have gathered for the "World Gratitude Counter" that creates a community of happiness.  The World currently has over 65,000,000 HappyHeart Beats uploaded.  Walk your dog, do yoga, drink water, eat healthy, volunteer, read, listen to music, whatever brings you joy. However long you do this activity, share that number with the world. Double your Happy HeartBeats when walking your dog or playing with a baby because you are responsible for their Happy HeartBeats as well.Watch the number increase as your positive activities contribute to change our world craves and needs.

You will also see Group Heart Beat Counters you can login and donate Happy HeartBeats to a specific child or organization with which you would like to share your HappyBeats.  Upload your Happy HeartBeats to baby Joseph with cancer at http://www.gtwyh.org/josephsjourney/grouphome.asp . Follow me on Twitter @HappyJulieHmker to be a team member for change.  In this blog I will keep you posted on new Counters and projects.

Join me on a journey starting today. Do you have the compassion and gusto to start something new and share your loving HeartBeats?  Let’s change the world, one HappyHeart beat at a time!  Game on.

Baby Joseph Thanks Your for Sharing Your Happy HeartBeats!!