Month: June 2018

Balance

Strength. Endurance. Determination.

These words came to mind while watching a group of young gymnasts at my first ever gymnastics expo.   Some girls were timid and others exuded confidence with each step.  Each tried and each did their best.

Balance was the most challenging for Kelsey.  I found it symbolic watching her with each step and each breathe.  Balance is tricky for us all.  Whether it is balancing family and work, technology with reality, or any combination of things in between, life can be a great balancing act.

Kelsey made it to the end and left the beam with a giant leap.  She fell and stood back up with a smile.  Without hesitation, she stepped right back up and finished the routine.

She always inspires me to lead with love and find positive every day.  Today was no different.  In fact, today, watching her balance helped me feel a sense of pride to know that she is managing balance and trying her best in all that she does.

First Grade

Today marks the end of Kelsey’s first grade school year.  We have seen her soar with confidence and wisdom this year.  It seems she has also learned to dream big.  We will always encourage her dreams and hope to help her reach them.

Birthday Wishes

Family is truly the epicenter of this foundation.  Without the love, support, and generosity of our families, we would not be the organization we are today.

The love we feel from our family also lifts us up.  We have met new families on our family support group site and pray for the families around the world afflicted with PAN and dada2.  It is not always easy to digest the reality of this disease and the daily strife it causes for families.

Last week, we tapped into social media with another feeling; hope.  We know that we are not alone in the rare disease community and we try to lift each other up as a result.  Sometimes, when things get dark, you need to find strength in those around you.

A dear family member has been struggling with her own battle and for her birthday this year, she wanted to do something special for Kelsey’s Kaleidoscope, Inc.  Inspiration can come when you least expect it.  Though she already reached her goal, I invite you to view her fundraiser and want to thank her for spreading awareness and raising funding for our fight.

Love.  Hope.  Gratitude.

May your birthday wishes come true, Jessica.

Click on the link to see the cause or donate!

Tucked Away in Dreams

The end of a school year is near.  This end mark is causing reflection, pride, and accomplishment in our household.  Though we are weeks away from the close, my children seem particularly anxious about the last day of this school year.

Along with the kindness and respect my children have gained by their experiences this year, wisdom is also evident in their daily instruction.  The lessons of the year are adding up to a sum of happiness and joy overall.

These lessons do not come without disappointment, too.  Whether the disappointment is missing a question on a test, a conflict with a friend, or a scheduling dilemma, disappointment comes when we care the most.

My son and daughter went to bed feeling disappointed tonight.  Sadly, Kelsey was saddened by her peers not understanding her disease (something she brings up almost daily before she closes her eyes).  My son was disappointed in a scheduling conflict.

Neither felt satisfied with our parental responses though we always try our best to explain matters in clear terms.

A part of love, however, is resolution and though our conflicts may continue to exist in the morning, our fears and emotions are tucked away in dreams for now.