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

Comedy for a Cure

Join us on November 22, 2019 from 7:00 PM – 11:00 PM for our fourth annual Gala!  This year, we will feature a comedy show, featuring a Comedy Line Up sure to keep you laughing!    The show will include comedians: Andrew LeeBrett DruckRob Ryan, and Cory Jarvis

Tickets are $75.00 per person and available here .

This year’s event will be held at Auletto Caterers: 1849 Cooper Street Almonesson, NJ 08096.  Guests will enjoy an evening of cocktails, stations of food, music, door prizes, silent auction, and Chinese auction items.

Email newviewforpan@gmail.com for more information or to donate a basket!

We hope to see you there!

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.

Grace Today

Routine lab work, it seemed.  We scheduled our time as usual and showed up with our appointment to avoid lines or waits for Kelsey.  On average, Kelsey has to draw between  6-21 vials.  Though that sounds alarming (and sometimes looks equally as alarming), we are as used to this procedure as possible at this time.

Kels likes to talk as she awaits the needlepoint.  She typically handles herself so maturely that she does not even require a handhold.  Sometimes, she likes to do so just for added security.  This weekend, she said, “I’ve got this.” 

The technician was surprised by Kelsey’s wit and conversation and we sign the papers and verify the information.  She was also delighted with Kelsey’s mature conversation and positive attitude upon sitting in the chair.  “How old are you?” she asked repeatedly with the joyful young woman who sat before her in the chair.

Suddenly, Kelsey’s face changed as the needle went into her arm.  Nothing was coming out… she said softly yet firmly, “It hurts so much,” as a tear ran down her cheek.

The technician called for assistance and looked nervous.  We all tried to stay calm.  I shot a look of concern to the technician as Kelsey grabbed a hold of me tightly.  Something routine turned into a scare in a matter of seconds.

Within a few minutes, it was over.  The vein was properly identified and the vials were full.  Inside, I was shaking and alarmed, but outwardly praised Kelsey and held her tightly.

Before we left, the technician stopped Kelsey to say, “Thank you for showing me such grace today.  Many adults would not have been able to do that.”

Brave has become a past time for Kelsey. 

When we got in the car, tears filled my adult eyes and Kelsey ripped off the band-aid to “forget about all of that.” #thisishowIbrave she said with her BRAVE headband on and a smile.

Guess My Trait

Guess My Trait- write a paragraph about a character’s thoughts, words, and actions that convey the trait you have been given.  Can you guess the trait that Kelsey’s brother described?

He wrote:

Kelsey has to push through things that none of us go through every day.  She is constantly monitored and checked by doctors and is daring.  Daily medications and injections are required to keep her healthy.  When her body flares, she gets or had rashes and spots and requires biopsies and lab work to determine treatment.  Even though she faces these challenges, day and night, she wakes up with a smile and doesn’t let her disease stop her.  This is why Kelsey does what she does.

BRAVE

#thisishowIbrave

We challenge you!

#thisishowIbrave

Brave can be anything to anyone.  Getting out of bed, driving in a storm, prioritizing, receiving an injection, or enduring a hard day are a few examples recently heard about how one overcomes and braves through the day.

We are brave and so are you.

We nominate you to tell us how you brave!  

#THISISHOWIBRAVE CHALLENGE:

Nominate 3 people to support Kelsey and rare diseases everywhere.  Show us how you brave!  You have 3 options:

1. Tell us how you brave with #thisishowIbrave

2. Purchase Kelsey Hates the Needle

3. Donate $25 to Kelsey’s Kaleidoscope, Inc. @ www.NewViewforPAN.org

You have 48 hours!

#thisishowIbrave

The BRAVE headbands have given Kelsey and her brother a true sense of support and a feeling of kindness.  Then, Kelsey’s incredible school librarian included us in the evening book fair last night.  We sold 35 books and 60 headbands to further increase our outreach and raise awareness in our community.

We are grateful for all who have helped and supported us in September, which brings us to October.

October 1 brought the launch of #thisishowIbrave.  Kelsey’s nominations will be in soon to start the fun and help the world see how brave each of us can be.

Choose Your Words Wisely – Update

Kindness won last week following a less than stellar start.

A three-mile run and a family talk helped us to forget the mean comments of the young woman who decided it was appropriate to be unkind.  It was a teachable moment we used to talk through the power of our words and the importance of each one we say aloud.

Clarity also came with an outpouring of love from Kelsey’s friends and the positive outlook Kelsey chooses to display each and every day.

Kelsey was both excited and happy to return to school and see her friends following.  All-day, we waited and hoped that she would come home without incident.  Her brother gave Kelsey a pep talk and continues to wear his BRAVE headband every day to support his sister in his own silent and sweet way.

That night, instead of sadness, Kelsey came home to tell us that kindness won the day.

The same child who sent parental instincts into less than desirable places last week realized that Kelsey was her friend after all.  Maybe it was her cute brother’s headband, or maybe it was the friends who surrounded her and wore their headbands daily, too.  (Thank you, by the way).

Whatever the reason, the same child asked Kelsey for a headband.

That night at practice, that same child wore her headband.  The next day after school, Kelsey revealed that the child who upset her so much on Monday was now a friend of hers.

“That’s how kindness wins,” Kelsey said.

It will not always be so easy, but it is great day when kindness wins.

To kindness…

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…

Support

We have struggled to publicly talk about all that Kelsey endures and all that we have seen.   Though we write and fundraise, it is still hard to actually speak to her teachers or friends about the disease because saying it makes it all real. Sometimes, it is easier to hope than to state your fears or reality.

However, Kelsey wants to talk about it and Kelsey created her BRAVE headbands to make a difference.

The support has been incredible.  Friends and family have called, asked, and worn the bands.  She continues to wear her band to school daily with pride.

Though we still seek a cure and worry a great deal, support keeps us hopeful for someday.

We are grateful for all who have asked about Kelsey, worn a band, and to those who lift Kelsey in their prayers.

Be BRAVE today!