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.

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.

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

#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…

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.