Brave!

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Here is our Team Sharnetzka JDRF Walk Video 2013!  It was inspired by the song “Brave” shared with me by one of my fellow D-Moms.   She is right!  Our daughters are some of the bravest girls around!

To visit our team walk page or to join our team click here.

Safe place

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My Mom always jokes that it is her job as a Mom to make my life easier. We laugh about it because I am a grown woman with kids of my own, but in a way she is right…we all try to make our children’s lives flow more smoothly, we try to help them in any way we can, and we certainly try our best to protect them if at all possible. It is that instinct to protect our kids at all cost and my failure to do so…that has been keeping me up at night.

Truly, one of the most painful things in life must be the inability to console your child. Our children look to us as their protectors and caregivers. It doesn’t matter if they are hurting physically or emotionally, it’s our instinct as parents to take their pain away. Usually in childhood, all it takes is a kiss and a band aid to fix almost any boo boo. Unfortunately sometimes the pain is just too much, the health problem too challenging or the emotional ache too great for parents to resolve. When our children are hurting and there is nothing we can do, it is heart wrenching!

This summer was wonderful.  We made so many great memories but all summer there was the  knowledge that the fall would come and with it…another hospital stay. Not for Corinne, but for our youngest. Our three-year-old was diagnosed with VUR or vesicoureteral reflux. Not only was she diagnosed with the condition, but test results had shown that she had sustained kidney damage as well. When the specialist recommended surgery we reluctantly agreed. Although her kidney damage was irreversible, surgery gave us the best chance to prevent further organ damage. Our hands were tied. We tried to keep things in perspective…if there was a surgery to cure or treat Corinne’s type 1 diabetes…it would be an answer to prayer. Despite our efforts to remain positive and the distractions of summer, the surgery date loomed ahead.

When the day of the surgery arrived, we solemnly packed our bags and prepared for our trip to AI DuPont Children’s Hospital in Wilmington, DE. Although AI DuPont is an amazing facility and our surgeon and nurses were top notch, the two days spent there were nothing short of a nightmare. Waiting as we imagined our beautiful baby lying on an operating table being cut open was hard enough but being unable to console her as she struggled with post-operative pain, bladder spasms, and being hooked up to IVs and a catheter was something I hope to never re-live.

So many times since Corinne’s diagnosis, I have not been able to soothe her pain whether emotional or physical. The past month, dealing with our youngest daughter’s health problems has once again left me feeling frustrated and inadequate. For me, there is a sense that I have let my daughters’ down in the most basic of ways…they trusted that I would keep them safe, protect them and take away their pain. 

Unfortunately it happens to all parents at one time or another. It may not be a chronic medical condition or a painful surgery…it may be a failed marriage or financial hardship. Our children experience pain in so many ways and try as we might…we cannot always fix it!  Although the situations are different, the feelings are the same.  As parents we feel helplessness, guilt and our own physical pain as our heart aches for them. 

In the end, what has finally given me peace is the fact that my daughters still look to me for comfort despite the fact that I couldn’t make it better in their darkest moments.  Although I feel like I have let them down, somehow I am still their safe place.   It seems that what really matters to our children is not that we as parents can’t fix everything or take away their pain but that we are there by their side.  In the face of our children’s pain, we are left to do the best we can to comfort, console and support them praying that in the end we succeed in “making their lives easier” even if just a little.

***As I proof read this post, I received a call from our daughter’s surgeon.  It seems an ultrasound completed today revealed that her right kidney is enlarged.  Additional testing is being scheduled this week at a local hospital to determine the best course of action.  Please keep our daughter in your thoughts as she must once again undergo sedation, catheterization, and have an IV placed.***

JDRF Kids walk to cure diabetes at Fawn Area Elementary

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This post is LONG overdue but I can assure you that the efforts of many and the genuine sense of love and caring that we felt on May 10th will NOT be forgotten. I am blaming the late post on the end of the year rush and a hectic family schedule…my appologies to all involved that it has taken me SO very long to write this. Please know that my gratitude could not be more heartfelt.

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On May 10th, Fawn Area Elementary held a JDRF Kids Walk. The JDRF Kids Walk is an educational in-school fundraising program with 2 goals: 1) to educate school children about type 1 and type 2 diabetes and 2) to provide students with the opportunity to raise money to help fund research for type 1 diabetes. It is truly a chance for kids to help other kids.

In the months after Corinne’s diagnosis, our school nurse expressed an interest in bringing the JDRF Kids Walk to Fawn Area Elementary. She encouraged Corinne to speak in class about type 1 diabetes in an effort to educate her schoolmates. As Corinne shared her experiences, many students expressed compassion and empathy for the daily challenges of living with diabetes. Our nurse recognized that a walk would be the perfect way to give the students an outlet to demonstrate how much they cared and also a chance to make a positive difference for Corinne and other type 1 diabetics by helping to raise money for a cure.

In April, JDRF came to the school for an assembly to kick off the event, as well as to discuss type 1 and type 2 diabetes and the importance of a healthy diet and exercise. Corinne had a chance to share in front of the school about her diagnosis and to answer question about type 1 diabetes. Following the assembly, information was sent home about Corinne and another child in the school who also has type 1 diabetes, along with information about fundraising and general information about JDRF.

With the walk falling at the end of a busy school year, I was careful not to have high expectations. Nonetheless, the event was still the perfect way for Corinne’s fellow students to show their support and a great opportunity to educate kids about type 1 diabetes.

On the afternoon of the walk, I arrived a little early to help out. I was immediately impressed with the highly organized stations and activities that our nurse and school staff had set up. There was a disco station, an obstacle course, a station staffed with volunteers from Fawn Grove Fire and Ambulance Company, a space for family members with type 1 and type 2 diabetes to meet and greet one another, and a station for water and Rita’s Italian Ice.

Corinne and a fellow T1D schoolmate had a chance to cut the rope to begin the walk. It felt like a celebration of sorts with the whole school cheering them on. Having the walk at the close of her fourth grade year seemed fitting.  As Corinne walked the track, she was surrounded by classmates and school staff who had supported her through her diagnosis, transition from injections to insulin pump therapy, and as she received her diabetic alert dog, Sugar.

As the kids walked and checked out the cool stations that scattered the school lawn, the fundraising envelopes were collected. In the end, it was not only the students who raised money, but staff members as well. We were especially touched by donations raised and collected by the middle school gym teacher, my husband’s former basketball coach.  Community members, schoolmates, teachers and staff, led by our AMAZING school nurse…came together to help US fight diabetes!

Some days our battle against diabetes feels overwhelming, lonely and even hopeless but on May 10th we were reminded once again that we are NOT alone. So many people truly care and want to help. The JDRF Kids Walk served as a HUGE reminder of that during a time when Corinne and I were both struggling every day to keep diabetes in perspective.

When the walk drew to a close, I said a tearful and heartfelt thank you to our nurse and loaded up my car with some of Corinne’s girlfriends who were coming over to spend the night and help us celebrate her 10th birthday. The event couldn’t have been more successful and Corinne was in high spirits as we began her birthday weekend.

A week or so later when all of the money had been counted, our school nurse gave us some pretty shocking news. Not only did we reach the $1000 mark, which was the amount JDRF projected for a school our size…the staff and students raised a whopping…$4,342.59. Levi’s first grade class raise the most money of all the grades in the school and Corinne’s home room was the top fundraising class in her grade. We were truly in awe of the fundraising efforts of so many people to help fund research for a cure for diabetes.

Most importantly the walk was a BEAUTIFUL show of support for Corinne and our family.  It was a touching reminder that we are surrounded by family, friends and a community that cares.  Sometimes managing a chronic condition like type 1 diabetes can become overwhelming.  May 10th offered us a ray of hope that chased away the dark clouds of anxiety, fear, and depression that sometimes threaten our days.

We owe a huge thank you to Corinne’s teacher, Mrs. Stubanas, everyone at Fawn Area Elementary, Fawn Grove Fire and Ambulance Company, Mr. Rudisill and the many volunteers who helped to make the day a success!  We owe a VERY special thank you to Mrs. Riale for organizing and coordinating the entire event!  We will be forever grateful.

Off to camp…leaving the nest

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There are two lasting bequests we can give our children. One is roots. The other is wings. ~Hodding Carter, Jr.

Corinne and I have been pretty inseparable since her diagnosis but even great partners sometimes need to branch out and try a solo flight. It wasn’t easy to push her out of the nest but she needed to see that she would not come crashing to the ground without me. She needed the chance to fly.

This weekend, Corinne went to Diabetes DESTINY camp in North East, MD. Attending diabetes camp is an awesome opportunity for kids with type 1 diabetes to socialize and hang out with other kids who completely understand the challenges and struggles they face. It is a chance for them to form friendships, to gain confidence, to discover their independence and to just enjoy being a kid.

Diabetes DESTINY Camp is a very special extreme sport weekend camp held at North Bay Adventure Camp. The mission of the camp is to provide people with diabetes the opportunity to maximize their ability to perform at their highest level in all areas of sports, fitness and life activities while maintaining intensive glucose control. They strive to empower each participant with an attitude that “yes we can do anything we want with Diabetes”!”

Corinne is truly a thrill seeker who loves rollercoasters and is always up for a challenge. An extreme weekend with the promise of a zip line, is right up her alley. Still, she was nervous about going away to camp for the first time. It is one thing to worry that you will be homesick but quite another to carry with you the fear of being away from the people you trust to help you manage a chronic health condition like diabetes. She knew the camp was staffed by highly trained endocrinologists, nurses and counselors who have T1d,…BUT they were all strangers. It was hard for our daughter to imagine going through a hypoglycemic incident with anyone other than her diabetes circle of trust.

When we arrived at camp on Friday evening, Corinne quickly made friends with her bunk mates and counselors. She checked out their insulin pumps and told them all about her diabetic alert dog, Sugar. After touring the camp and helping get her bunk set up, I headed on my way praying for her to have an unforgettable weekend and stable blood sugars. The only tears shed were mine.

Thirty minutes into my ride home, I got a call and she was scared. She was afraid to dose for dinner without me and afraid of going low in the presence of strangers. We talked through it and the amazing counselors and staff encouraged and supported her. She made it through the first night-a HUGE accomplishment!

Saturday I received a picture on my phone accompanied by the words…

look what I just did!

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Throughout the day, the pictures kept coming.

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She not only left the nest…

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Our brave daughter was SOARING!

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Her weekend was filled with extreme challenges and motivational speeches from world-class athletes who also have type 1 diabetes. She became buddies with Jen Alexander a marathon swimmer who after swimming 19 hours and 17 minutes, became the first person to swim a double-crossing of Canada’s Northumberland Strait. She also spoke with Bill Carlson who was the world’s first person with type 1 diabetes to cross the finish line in the Ironman World Championship. Surrounded by marathoners and star athletes, she was inspired and empowered to face her own personal challenges.

Today when I picked Corinne up from camp, she excitedly recounted stories of her weekend experiences and proudly showed me the obstacle course and giant swing that went out over the Chesapeake Bay. She was eager get home to see Sugar and text her new-found friends who understood the highs and lows of diabetes much more intimately than I ever could.

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As we pulled into the garage, I told her just how proud of her I was for having the courage to spread her wings. I said “You did it…you flew out on your own” and she smiled and said “it was so much fun but I was ready to fly back home Mommy.”

And truthfully, I am relieved to have her back under my wing…until next year comes around.

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Here is a video from a previous year.

One Year…

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One year ago today, our life changed forever…

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On March 13th 2012, after several emails with Corinne’s 3rd grade teacher, I scheduled a late night appointment with her pediatrician to have her evaluated for a bladder infection. We arrived at the appointment around 8PM. Thirty minutes later, Corinne was diagnosis with type 1 diabetes and we were told to pack our bags and prepare to head to the hospital.  Over the following weeks, we were reassured that diabetes would become a routine part of our lives, that it would become much easier AND that we could get her diabetes under control.

After 365 days of type 1 diabetes…

We are managing diabetes BUT it refuses to be controlled.

We are regimented BUT diabetes won’t conform to a routine.

We have become knowledgeable BUT there is much that we do not understand.

We have equipped ourselves with every tool available BUT diabetes can NOT be fixed.

Diabetes does not define our daughter BUT it affects every aspect of her life.

Living with diabetes has gotten easier BUT it is NOT EASY!

So we prick,

we count,

we bolus,

we correct,

we treat,

we set alarms,

we inject,

we change sites,

we manage,

we fight,

we believe,

we hope….

And we will NOT stop until there is a cure!

corinne

One day…

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Yesterday Corinne’s teacher shared this picture with us right before we attended the annual JDRF research summit. After hearing all of the presentations on the promising research being funded by JDRF, I truly believe that I will live to hear my daughter say the beautiful words “I used to have diabetes.”

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Hello from Corinne!

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Hi, this is Corinne. I am sorry my Mom has not been blogging lately.  We have been plenty busy with our new pup, Sugar. Sugar is doing very well. She just passed her AKC Star Puppy test for obedience training last Wednesday! Sugar won an award and a medal. We are very proud of her.

There is more good news. Mr.Phil, (my D.A.D. trainer) will be returning to our house on March 24th and we can’t wait to see him, especially Sugar. Some more good news is that I am getting a continuous glucose monitor that will detect what my blood sugar is at all times. It will also alert when my blood sugar goes out of range. Between Sugar and my glucose monitor, I think I will be pretty good.