Tag: #gratitude #newviewforpan

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.

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

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 Lee, Brett Druck, Rob 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!

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

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…

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.

The Rear View

As the school year comes to a close, our family has had time to reflect on the year we worked through and locate the bright side of it all.

Our family endured two medication changes, a biopsy, a concussion, 64 doctor views on the biopsy, months of steroids, marks like a cheetah for months, a mysterious eye funk, new scars inside and out, a mangled foot, an ambulance ride in a different state, and too many “I’m not sure” or “I do not knows” responses.

We close the year by putting those in the rear view.  We choose to move forward and not look back.  Though the moments and challenges brought us down at times, the bright side keeps us moving forward.

Our successes included Superintendent’s List, a communion, a character award, new friendships, a new instrument, a new sport, a new club, a gala, a golf outing, and the publication of a book.  We choose to celebrate the moments that made us proud and joyful.  We choose to recall the challenges to remind us to grow and endure.

The Rear View is a perfect lens to see shortcomings, learn from failures, and reflect on success.

The rain comes and goes, but the rainbows make it all worth it.

Reflect.  Reset.  Leave it in the Rear View.

Perseverance

Today’s words come from a community that values character and recognized Kelsey for displaying perseverance.  Her teacher’s touching words speak volumes.  Below are the words that were shared about Kelsey and her exemplary character.

“Perseverance (noun), continued effort to do or achieve something despite difficulties, failure, or opposition. When asked what perseverance meant to Kelsey, she stated, “When you try and try even though it doesn’t go your way!” I couldn’t agree more. Kelsey is a perfect example of a student who demonstrates perseverance inside and outside of the classroom.

As she enters the classroom each day with a smile as bright as the sun, and a readiness to learn, you’d never know, but Kelsey fights a rare autoimmune disease called PAN.  PAN is a rare a potentially fatal disease that affects small and medium arteries causing injury to organs and unfortunately, does not have a cure at this time.

Despite difficult days, physically, mentally, and emotionally, Kelsey never gives up. When a challenge arises in the classroom, Kelsey faces it with confidence, patience, persistence, perseverance, and determination.

She is a thoughtful friend and wonderful role model for her peers. She goes out of her way to encourage others, and shows outstanding leadership skills in the classroom.

Kelsey is always willing to lend a helping hand.  Kelsey, I cannot think of someone who could be more deserving of this award than you.  You’re too positive to be doubtful, too optimistic to be fearful, and too determined to be defeated. You are one of the most courageous young ladies I’ve ever met. Never give up!  It is my honor to nominate you, Kelsey, for the trait of perseverance.”