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 A Mother's Eyes...

I would like to introduce myself to you…I am Charlotte Schild, Mom to Julie Hemker. This is the first time I have EVER written a blog entry. Julie invited me to be her guest blogger this week and of course I PROUDLY accepted. 

Being the parent of a precious child born with many physical challenges catches any parent off guard…in my case I was doubly caught off guard. My OB doctor NEVER suspected that I was pregnant with twins, as in the early 70's, ultrasounds weren't routinely done.  It was not until delivery I will ever forget those words spoken by my OB…" Oh my God! There is another one in there!" Life became a little more complicated and certainly challenging!!

Yes, Julie and her precious twin brother were quickly examined by the professionals and then wrapped /swaddled and placed in my arms - one on each side. It was at that moment that I fell in love with both of them. I had no idea any physical abnormalities could be present with my babies because this was the moment all parents eagerly await…holding their child for the first time. My point is that I didn’t meet a birth defect or abnormality…I was holding two precious creations!!!

Julie and her twin brother, Charlie, also had an older sibling, Terra, to add an extra spark in our family. Certainly keeping up with two siblings provided Julie with built-in playmates and an innate perception of not being different. Even with casts on her legs to correct her bilateral club feet Julie was able to walk around furniture with two artificially stable legs!! Keeping up with her brother/sister was a playful and at times a game of survival !!

There were a lot of MD appointments, worry, tears, financial constraints, challenges but we tried to keep the family unit as balanced as possible. If Charlie and Terra were on their little tricycles then Julie was on her wheeled circular arm propelled bike. Swimming was an activity made available to Julie through the Easter Seals Center where she received water therapy and developed her love of water. Again all three children were able to play together - Julie relying on her upper body strength to propel her through the water and her siblings kicking up a storm. Nothing seemed different at that time.

As Julie grew, more medical/surgical interventions were necessary and Riley Hospital became a place where doctors, nurses, therapists, cleaning and dietary staff, teachers, other parents - even the parking attendants - became an integral part of our lives. We never knew what lay ahead but trusted in the skillful surgeons to continue to improve Julie’s life.

In regards to Riley Urology, the dept was small with a few examination rooms, a restroom and a waiting area. Within that small space however the most loving, skillful and compassionate doctors and nurses worked together to help our kids. There was a sense of community amongst us - the nervous and anxious parents comforting our babies and children.

I saw miracles occur specifically with my daughter, Julie. Through several tedious and complicated surgeries , Julie finally transitioned into her very first pair of panties!!! We, as a family, joyfully celebrated that event with yes, a Panty Cake!  A perfect time for celebration!

It was through the endless hours the Urology doctors and nurses worked with such brilliance and wisdom that our kid’s lives have changed.

Remember…this is my first blog ever and in order to keep my reader’s interest peaked I would like to remain as an ongoing guest blogger - sharing my experiences as being the parent of a Riley child. That Riley child is now an adult woman, happily married to a wonderful young man. Julie continues to face physical challenges every day with that same innate determination and strength she had as a child.

Again…Julie is not a physical liability…she is an empowered strong woman wanting to help others!!!

Please make a monetary donation to the Urology Department of Riley Hospital at http://www.firstgiving.com/fundraiser/HappyJulieHemker/juliehemkersfundraisingpage. There may be another little girl out there who could be standing behind a Panty Cake with a smile on her face -celebrating a life change she will never forget.

Julie at her "Panty Party" 

I will never forget the extra sparkle in Julie's smile that day! Thank you Riley Urology!

Stay tuned, more to come….