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.

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 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!!

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!