Guest Blog – Sort of Back To Normal

Kelsey wrote a guest blog today.  Be brave, stay safe, and enjoy.

“Today I want to say I have felt closer to my family than I ever have before.   I wanted to tell you because you might think it is too much time away from other people.   You may be sad.  You may be lonely.  When you really think about it, you are spending quality time with family that you didn’t get before.  Look on the bright side, restaurants are opening inside and outside for dining.  Be kind.  Be brave.  Be yourself.

If you really get into it, life is getting back to normal but you still have to wear a mask.  It is a good thing because people need to start feeling happy.  They probably need time away from home.  It is a good thing that you can go out and/or stay in.  Life is sort of getting back to normal.   The good thing for me is that I always have a family to see and a car to see them.  I hope you had a family to see, too.   Now that things are a little bit back to normal, enjoy it. I cannot wait to go to a restaurant and EAT!   My family is not ready just yet, but I hope that you get out and can finally go somewhere.”

Be brave and enjoy.

Be a Light

As virtual graduation ceremonies commemorate the year and reopening phases begin, we continue to hope for the future and 2020.  Bright spots have started to appear.

Today, driving slowly as Be a Light played on the radio, a car was pulled over onto the side of the road.  A woman was standing in the middle of the road holding out her hand to stop.  As the lyrics played, “…be a light” she slowly walked across the road.  Next, it was clear.  This kind woman was carefully placing a turtle onto the grass at the side of the road.  She was freeing a turtle who was stuck in the middle of the road.

This small act of kindness was a glimmer of hope.  She was a light.

Look for the good.  Save a turtle.  Be Brave.   Be a Light.

Difference

Difference is always celebrated in the community of a rare disease family.  Often called zebras for their unique traits, we embrace differences here.

Kelsey mentioned that she had a new song in her head.  She wrote the words for me and has no idea how remarkable they are right now for our world.  Children are our future and our future looks bright tonight…

Still a work in progress, but the current chorus:

Difference

“Difference is love.

Difference is pure.

Difference is power.

Difference is a thing that can never be taken apart.”

Be brave and celebrate your difference today.

Practice Injection Exam

“Tomorrow, I have a major test,” Kelsey said worried before bed.
“What is your test on?” I ponder in our world of virtual learning…
“Injecting a needle properly.  Don’t worry, it’s on a dummy, code word doll (said with a wink).  It’s practice for when I am a doctor someday.  I have to start learning now,” replied Kelsey with full sincerity.
She typed a list of all the necessary steps and practiced each step on me to ensure accuracy.  I gave her an A+.
Our talk continued with life goals and the innocence of youth, a turn occurred.  “Should I be scared of COVID?  If I became a doctor and the emergency comes back, how will I help patients and worry about me?”
When the day to day “normal” has become routine, moments bring you back…
Be Brave.  Stay Strong!

Wicked Warriors, Stand Strong

A few months ago, a philanthropic group of women were on the soccer fields with news of an organization that ended abruptly after a decade of success, love, and teamwork.

Stronger and braver now than in the past, this tremendous group of warrior women could not be stopped!  They formed a new alliance and stand together as The Wicked Warriors to make a difference in their community.

This week, The Wicked Warriors voted on their inaugural charitable selection.  Though we are in uncertain times and the season of dragon boat racing may not commence as planned, these warriors voted and selected our organization to begin their quest to make a difference.

We are grateful that such a brave and dedicated group of women selected us.

Thank you for your support and for showing us, love.

Be Brave, Wicked Warriors!

#BraveSquad

The stress that a rare disease places on a family daily is sometimes hard to truly describe.  The quest for normalcy can sometimes drain us.  However, sometimes it brings us together in ways we never anticipated.

Kelsey’s brother has started a movement.  Since the start of the 2019-2020 school year, he has quietly supported his sister by wearing a BRAVE band.  It is a small movement, but one he leads daily with his BRAVE band.

When it was time to join a school club to support business ownership and the process of how to run a business, her brother and his buddies got to work.

Together, they designed unique items and together the #BraveSquad sold their items.  Proceeds of all purchases were donated to our organization.  We are beyond grateful.

Kelsey’s brother has looked forward to this night since September and he proudly sold 115 BRAVE bands with all proceeds going to Kelsey’s Kaleidoscope, Inc.  He does not always understand the rare journey we walk along together, but he has realized the importance of it in our lives.  He quietly supports his sister daily.  We are beyond proud.

#BraveSquad

#RareAsOne

Mark Zuckerberg, Facebook Founder, and his wife, Dr. Priscilla Chan, committed to the challenge, “Can we cure all diseases in our children’s lifetime?”  Daunting.  Amazing.  Fantastic idea!  Can they do it?  Here is to #hope…

On Monday, the couple announced one step in the right direction to conquer the challenge set forth in 2016.  They will offer grants to 30 recipients to advance research, training, and awareness.  Of the 30 selected, the dada2 foundation is one of the recipients to benefit from this large grant along with other resources over a two-year time period.

Wow.  We only hope our small community of dada2 patients grows and the resources lead to a cure for our girl and the many others we know with dada2.  Here is to hope and generosity in 2020…

#RareAsOne

NEW Brave Bands

Kelsey’s brother started a mission in the fall.  He wanted to join the school Entrepreneur club and sell his trademark Brave Bands.  He wanted to donate all proceeds to Kelsey’s Kaleidoscope, Inc.

This small dream has already led to the design and purchase of almost 1,000 Brave Bands.

If interested in supporting a brother’s desire to find purpose and meaning in his family’s journey to raise awareness and fund research for his sister’s rare disease, please let us know.  Brave Bands will be available for sale at the Market on 2/10.  Presale designs will be available on 1/25/20.

New colors feature local colors and are featured below:

9 months to 9 years

At nine months old, we were escorted back to an isolated hospital room following a scan that utilized sedation to find Kelsey in the arms of a new doctor wearing her yellow hazmat-style shielding.  She rocked Kelsey in her arms and an immediate connection was made.

This doctor was one who would work with us for the next (almost) decade.  She became a role model to Kelsey, a comfort source when in pain, and a trusted ear for her parents.  Words cannot express the gratitude a family feels when in the care of a trusted doctor for the child and the family.

Last week, the call we have anticipated arrived.

As Kelsey approaches her ninth birthday, this incredible doctor moves on in her career.  She will no longer provide care to Kelsey.

Nine years have taught our family that having an advocate who will call you on the weekend, meet you late in the ER and arrange a 10:00 PM biopsy, and HEAR you are a true gift.  Our family was blessed for nine years with such care.

Tonight, we met our new provider as Kelsey begins a few subtle signs of worry and concern.  We are hopeful for a continued level of care from this doctor.  In his own words, “I can see I have big shoes to fill.”  Though in reality, the shoe size was small, the sentiment rings true.

Kelsey’s Fight Song

Easter 2014 went from an Egg Hunt to the hospital.  Kelsey and her mom drove to admit Kelsey because she could not walk.  As Kelsey slept off some pain, her mom cried for the unknown.  Then, a new artist shared her new song.  @RachelPlatten shared the story of her fight and Kelsey’s mom went from sadness to hope.   A powerful song can do just that…

A 2019 Thanksgiving family talent show had many displays of talent.  Kelsey selected Fight Song and the words speak volumes.  Though her voice was faint due to respiratory struggles and croup in the preceding days, the message is clear.