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Unique and Unified

Last night, the Family Advisory Board of NC Children’s Hospital kicked off a new year with a fantastic session!

Truth be told – my nerves were high as this would be my first meeting as Chair, the responsibility heavy on my mind.  But as our members filed in, ease filled the air.  Individuals with unique stories, varying experiences, different personalities and a variety of skills.  Parents, patients, care providers, and clinicians. What an eclectic bunch!

I began by recognizing journeys in healthcare often include pain.  Yet within those trials exists what I have come to call the “treasure trove of suffering”.  Unfathomable gifts wrapped in unexpected packaging.

Resilient strength of children.
Fearless love of parents.
Pity replaced by compassion.
Counting each day as a gift.
Recognizing the miraculous in the familiar.
Beauty in the broken.

As everyone shared their stories and acquired treasures, eyes filled with tears, heads nodding with empathy.  Stories of strength, stories of trial. Stories of love, loss, and hope.  Unique journeys walked by one-of-a-kind individuals.

Through acknowledging our unique experiences, we found ourselves remarkably unified!  Unified by the treasures gathered along the way and respect for the trials endured.

How easily comparison could sneak in:
“But my child is still alive; yours died!”
“My journey was short; you’re still on this difficult journey!”
“My kids are healthy; what could I possibly bring to the table?”
“I’m just a healthcare provider.  I’ve never had a sick child.  How could I contribute?”
“I only…  I just…  But I haven’t…”

In one accord we voiced that comparison would have no place on our Board.  We acknowledge our unique experiences, roles, etc.  We honor the treasures our troves have wrought.  And together – parents, patients, and providers alike – unite with the common goal of serving the healthcare community that served us well.

NC Children’s Hospital Family Advisory Board: Unique AND Unified!

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Foundation Of Celebration

For the past 5 years, I’ve had the privilege of volunteering at UNC Healthcare’s Children’s Hospital in Chapel Hill. From advising to PICU quality improvements projects, publications to resident curriculum development, it has been a joy to give back to the hospital that gave our family so much in 2007.

Recently I transitioned to the role of Chair of the NC Children’s Hospital Family Advisory Board after 3 years as Vice Chair. Our founding Chair, Larissa Muchnick, is a phenomenal woman, mom of three (including brave Ryan with kidney disease), fitness coach. She led our Board incredibly well and taught me much by her example. I’m excited/humbled for this next season of taking her place over this incredible Board!

This week, I challenged our members to reflect on their experiences in healthcare and find the things worth celebrating. I’d like to share and extend the same challenge to you! Your journey may not involve healthcare or diagnoses. Perhaps its a relational valley, a financial hardship, an unexpected change of jobs, location, friends. In order to be effective in producing positive change, we must build on a foundation of strength and celebration. Otherwise the cost of making improvements will be too great for our already weary souls. I hope this FAB challenge strikes a chord in you and gives you cause to celebrate something in your own life today.

Share your stories!

“As we look to the year ahead, I’d like for us to spend the next few weeks getting to know each other’s stories better. We all have been impacted by healthcare in a personal way, whether through receiving pediatric diagnoses or providing care to these tiny undercover superheroes. While their journeys have been marked by unexpected difficulties and some undesired outcomes, I want us to celebrate how truly courageous and strong they are!

Its easy to focus on the disappointments inherent in healthcare.
After all, that’s why we’ve gathered as an Advisory Board – to make our hospital better through our experiences and expertise. BUT! I want us to build from a solid foundation of strength and celebration.
Our kids are superheroes! They face mountains every day and keep on climbing! Let’s celebrate their victories together. Let’s share the lessons they’ve taught us with each other. Each patient represented in our Board carries invaluable lessons and treasure troves of inspiration for us all!

20140729-124038-45638169.jpgPlease reply all and tell what lesson(s) your child/patient has taught you. Share how they have changed you for the better. If you’re faculty or a clinician, share the impact your patients and their families have made on you!

Caring for chronic illness is hard.
Together we can lighten one another’s loads by sharing the silver linings, the little miracles, the blessings in disguise!

For me, Isaac taught me more in his 24 weeks of life than I ever imagined possible.
Isaac replaced my pity with compassion.
He taught me joy in little victories.
He opened my eyes to strength I never knew I had.
He showed me the wonder of the human body, how remarkable it is to be able to simply breathe, wake, live each day!
He taught me how strong babies can be and how fragile life is.
Isaac taught me how to redefine my dreams rather than become stuck in disappointment of original dreams destroyed or deferred.
He opened my eyes to the true heroes of this world: those physically broken yet strong in spirit, the parents who live out persistent love, the uncelebrated loved ones who sacrifice sleep, comfort, plans for the good of the broken ones.
He showed me trauma can become triumph if we don’t give up and open our eyes to see the good hidden within the awful.
He taught me EVERY child is a blessing no matter the form in which they come!

While I wish Isaac had never been sick, had been born with a whole heart, and was still with me today, if I were given the choice to trade it all to skip my own heartache, I wouldn’t trade a single second of it! My brave boy changed my world. I cherish every wonderful, heart-wrenching, precious moment of his life.

I am forever grateful.”

What treasures have your children/patients/trials/unexpecteds brought you?

Bring on the stories!!

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