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!

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

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.

B is for BRAVE

Brave has taken on a meaning that we will not ever be able to fully describe.  Over 600 headbands with BRAVE have been distributed in our community.

Over 600 headbands were designed by Kelsey, crafted by hand, and selected by Kelsey’s peers.  On Friday, it will be BRAVE day at Kelsey’s school.

We are overwhelmed by this simple yet powerful act of one teacher’s desire to help spread a message of hope and love.

The support, generosity, and kindness our family has felt during the past few months as a result of this headband is B for BEYOND compare.

Limited edition black bands with silver BRAVE are on order…

Thank you to ALL who have purchased a band, worn a band, or showed Kelsey support.

The season of giving is upon us, but the spirit of support and love are all around.

BE BRAVE #thisishowIbrave

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…

Whirlwind Week Ahead

When it rains, it pours!

The week of celebrating Kelsey Hates the Needle and our quest to raise awareness and support for all children who suffer from illnesses requiring injections and those who suffer as does Kelsey begins on Tuesday!  We will take on the Windy City with a news spot Tuesday morning and a Wednesday book signing at Chicago’s Webster Street Barnes & Noble of Kelsey Hates the Needle .   One lucky winner who purchases a book that day will win a gift certificate to a Chicago steakhouse and tickets to a Cubs game!

From there, we return to our previously scheduled engagement on Thursday, August 8.  Our president and author of Kelsey Hates the Needle and illustrator, Krystal Almora, will host a book signing at Barnes & Noble in Deptford, NJ at 10:30 AM. @krystalalmora

One lucky winner who purchases a book that day will win a Golden Ticket.  This golden ticket will win 4 tickets to the Phillies vs. Cubs game of their choice on August 13, 14, or 15.

Meet the author and illustrator, enjoy Story Hour with your family, and win tickets to the Phillies vs. Cubs all while supporting our non-profit Wednesday in Chicago and Thursday in NJ.

 

Thank you to all who support our efforts and our girl.

Celebrate with a Shake

The end of an epic year is upon us.  This year has been filled with experiences, pride, insight, and connections.  Authors Dan and Chip Heath explain how these factors elevate our experiences and change us The Power of Moments.

To culminate this year, our new tradition is to end the year with the celebration of a shake.  We discuss the year we tackled and the joy and challenges is brought to each of us.  Our one of a kind “freak shake” is offered  at a local restaurant.  The shakes are a sugary delight and an experience we enjoy together.

We connect, unwind, and share our favorite memories of the year.

Each year is worth celebrating but some feel more elevated than others.  This one felt especially exciting.

Perhaps it is coming off of a flag football Superbowl victory for our son or a violin rendition of Best Day of my Life for Kelsey?  Perhaps it is because with each new year comes new ways to learn and new bright spots to celebrate?  Perhaps it is just because freak shakes are just that good…

Either way, we celebrate today and the joy that the end of one phase brings along with the start of another.