BRAVE Redefined in COVID 19

This weekend, a BRAVE nurse had the idea to utilize BRAVE bands in her day-to-day work on the frontlines.  After she picked up the bands, Kelsey brainstormed the many other BRAVE men and women who work on the front lines daily.

We counted the amount of BRAVE bands we had remaining, and though it was a mix of colors and orders, we had exactly 100.  Kelsey decided that she wanted to donate BRAVE bands to those front line workers.  After two calls to ShopRite, the first deliveries are set for today by President, Mary Wagner.

#ThisisHowIBRAVE

Thank you to all who work and serve others!

Kindness for a Cure

Random Acts of Kindness followed a week dedicated to spreading cheer and joy at Kelsey’s School.  Then we were humbled with gratitude and our community’s support for Kindness for a Cure.  Kelsey lives in a community where she and another student suffer from a rare disease.  This year, one dedicated secretary (with the support of all around her) committed to supporting our local non-profit organizations for a school-wide fundraiser.  Wow.  The letter that went home is below:

One School’s Kindness for a Cure

February 10, 2020

Dear Parents/Guardians,

In coordination with the Great Kindness Challenge,  students, staff, and families raise funds for special causes each year. This year, our school will raise funds and awareness for two rare conditions that affect two very special students in our district. We will donate all the funds collected to the Shwachman Diamond Syndrome Foundation and Kelsey’s Kaleidoscope, Inc. Each organization will receive 50% of the funds.

To learn more, click on the links below:

Kelsey’s Kaleidoscope, Inc.

Shwachman Diamond Syndrome Foundation

Many of you may not be aware of these conditions and how they impact two local families, so we wanted to bring more awareness and attention to the rare conditions affecting Kelsey, a third-grade student, and Maggie, a fourth-grade student in our district.

We ask that families who want to donate coins, have their child bring them in a disposable container or baggie. Anyone who wants to donate via check, can do so by sending in a check written to either organization listed above. Donations can also be made online using the links above.

Our School is proud of the awareness we bring to our families and hope this fundraising effort can assist in bringing more attention and a possible cure to Kelsey, Maggie and all of those affected by these illnesses.

Thank you!  (All!)

We are blessed and grateful for this initiative of kindness.

 

#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

Nine Lessons in Nine Years

Kelsey soon celebrates nine years of life.  Each of her nine years has been unique.  She has endured so many inquiries, tests, and circumstances, many of them we as adults may not have experienced.  To put it another way, it has been a journey.   Each year of the journey has taught us something new.  We are grateful for each year and the lessons we learned.

Year One taught us resilience.  We spent 16 days hospitalized and torn apart as a family, each in pain with worry, concern, and lacking a diagnosis.  By the first birthday celebration, we bounced back ready to learn more and find an answer.  Each one of us was forever changed by the experiences that we can never fully explain.

Year Two taught us to advocate.  In year one, we listened to poor medical advice and waited on others to seek solutions.  Year one was painful.  Year Two was the year of advocating.  Remember to be your own advocate and advocate for your children’s needs, always.  No one will ever care as much as you.  We did not accept, “she is fine!” and we sought answers instead of waiting for them to come to us.

Year Three taught us to listen.  Year Three gave us a diagnosis.  We thought that would make life easier, but instead, it led us to more questions and further complexities.  Medication battles with insurance and a true inability to process how little we knew made us listen more and savor small moments.  Upon one biopsy that resulted in a huge incision on the neckline, the surgeon soothed a mother’s worry about the scar to say, “We have to make sure she sees her next birthday.  This scar will help us figure out how to get her there.”  Listen.  Trust.  Breathe.  That was Year Three.

Year Four taught us promise.  There was so much promise in the medication we were using and so much happiness and joy brought back to our life when the medication started to work for our child.  A child who was once lifeless and listless was running and climbing stairs.  Promise and joy were restored in many of Year Four’s moments.

Year Five taught us Vulnerability.  We began this journey with Kelsey’s Kaleidoscope and we started to tell our story.  We put ourselves out there and started to spread awareness and raise money for our foundation.  We connected with others who shared our story.  We were weak when Kelsey took a tough turn and faced the return of frequent hospital visits and scans.  We had a fridge full of medication that no longer eased pain or brought joy.  We were vulnerable and scared.

Year Six taught us patience.  We trusted and prayed and after eight months of changes, a calm came for Kelsey.  She was walking, running, and smiling with ease.  We were patient and we were grateful.

Year Seven taught us endurance.  The road had been long and pain Kelsey started to feel emotionally and physically transferred to each member of her family in some way.  We laughed, we cried, and we got each other through.  It was not without a long road and another failed medication.  Spots, weakness, and pain returned to bruise emotions and bodies.

Year Eight taught us hope.  We were beyond touched by the community efforts and new faces that learned of our journey and cared.  We published a book, we went on television, and we reflected on where we are at this time.  We have hope and gratitude.

Year Nine is unknown and undefied.  Together, we are ready to persevere and lift each other.  We plan ahead and dream big.  We thank you for your support and kindness.  We wish Kelsey a happy ninth birthday and pray for all of her wishes to come true.

The Universal Language of Princess

Thanksgiving followed our gala this year for the first time in four years. Traditionally, Thanksgiving is spent preparing for and readying our minds for the gala.

This year, Thanksgiving was spent with reflection and warmth. We traveled a distance to be with relatives and newcomers. It was a day where all were welcome.  We had a newborn, an old-timer, and a refugee Kindergarten child.

This child struck a particular chord with our family.  Kelsey prepped for weeks with items she wanted to give this young woman.  However, no amount of preparation could prepare us for the reaction she had to Kelsey’s generosity.

A language barrier existed until Elsa came out of the bag. A crown was placed and the twirling began.  Princess, we found, is a universal language.

Each bow, dress, clip, and doll were met with a smile. The child was beaming with happiness and the mother’s emotion was hard to contain.

‘Tis the season of giving and sharing, whether it is time, money, or gratitude.  Kelsey saw clearly how to satisfy another’s need.  We are grateful for the lessons she teaches us daily.

Some lessons come when least expected.

Kindness at DuPont

Mary Wagner, author of Kelsey Hates the Needle, and a guest star from Paw Patrol joined patients at Nemours DuPont Hospital for Children last week.  Mary was able to read aloud, spread joy, and donate books.  The patients were grateful for the visit, but we were grateful for the chance to help other patients from DuPont Hospital as they have helped Kelsey so much through the years.  Days there are not always easy, but kindness and generosity can go a long way.  Thank you for making a difference Mary.

Choose your Words Wisely

Mondays can be busy.  Even if we only have a few minutes between activities, we like to reflect on our day together.  The talk over our wardrobe change did catch us off guard this week…

“Today my feelings were hurt at school,” Kelsey said.

She elaborated, “this girl told me that her mom said I look silly out on the field.”  Then the same girl told me, “I wish you were not on my team.  You don’t deserve to be on it.”

HALT.  Deep breathes… Decisions, decisions…

The pause allowed for another moment we were not expecting.  Kelsey said, “Please do not get mad or tell her parents.  I told her that was really mean and it hurt my feelings.  Then I moved on.  I was with a few other friends and they all told her it was a mean thing to say.  It was really mean and really hurt my feelings, though.”

It hurt ours, too…

Later in the night, she further reflected to say, “it’s like we said when I had spots all over my body.  I remember when the kids in my class asked if I had chickenpox and they asked if it hurt.  I learned how to ignore it in my brain and say it is ok.  I never liked when people asked me about it, but I stayed brave.  I got this.”

Watch what you say, children are listening…

We discussed that we cannot change the way other people act or the words they choose, but we can choose our own.  Choose wisely.

Please spread kindness, respect, and love wherever you go today…

Life is Good Today

Our recent crash has offered perspective and a renewed appreciation for all of the love and goodness surrounding us.  Kelsey’s medicine has finally been working well and when Kelsey is good and Kelsey’s medicine is working, life is good.
Life is good today.
We recently traveled to the National Institute of Health Sciences for an array of tests and checks.  Fourteen appointments in two days were trying, but Kelsey is truly amazing.  She lifts our spirits and keeps us smiling, wherever we are.
Today, we are thinking about a young man named Cole who remains at the NIH following his bone marrow transplant.  He and his family await results and a hopeful return to normalcy following this transplant.  Summer has not been filled with sun and fun for this family.
Thinking and praying for Cole and his family.
Holding tight to the sunshine and fun in our lives today.

The Kindess of a Cub

By now, you have likely heard the story: Chicago Cub, Albert Almora, Jr. hits a foul ball and a child is hit.  The ball was moving around 90 miles per hour and a terrible accident occurred.

The hit was accidental.  The reaction is what made headlines.

Fortunate to have Albert Almora, Jr.  and wife Krystal Almora support Kelsey’s Kaleidoscope, Inc, @krystalalmora @kelseys_kaleidoscope we know of Albert’s kindness and commitment firsthand.  His dedication in the off season and genuine compassion are best captured when he is with his family and through the support he provides to charitable causes.

In case you have not yet viewed the news-worthy event:

Composure.  Compassion.  Kindness. The key attributes we should aim for when interacting with one another is captured in the essence of this story.

We are amazed by the empathy and emotion Albert Almora, Jr. displayed on the field last week and the way he exemplifies the traits of courage, gratitude, and respect in his daily life.

To great men who make mistakes, show emotion, and display courage even on live television, we applaud you.

Thank you, @almorajr for reminding us that kindness and compassion mean so much.