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.

Uncertain normalcy

When you come home from two days of testing and consultations from the NIH with a positive outcome, you smile.  Life is good.  When your child wakes up the next day with new marks, you feel disenchanted.  You feel like this cannot be happening (again).

You hope these new marks are just bug bites.  You were just tested.   You were just given a positive report.  You send the pictures anyway and await symptoms or the onset of something else.  You are in disbelief.

You shed a tear the next morning when the marks spread.

You start to worry more once the marks look like those you saw two years ago when lethargy and pain took over your daughter’s tiny legs.

You see the spread, you see the onset, you fear everything in front of you.

The village of support that surrounds you allows you to get through this hurdle, test appropriately, and inject as necessary.

You are scared and you are unsure of where this leads you.

Daily injections return to bring a sense of normalcy to an otherwise abnormal state of affairs.

You hope, you are grateful for all the doctors you have on standby, but you cannot help but feel …  something words cannot truly describe.

Storms we hope will pass

Each Tuesday night is unique.  The worry is constant and fear, worry, and sometimes anger are typical discussion points for most of the evening.

Tuesday evening was no different this week.  The marks all over the belly and the back were.  After a nice walk around a park and calming conversation, we thought our bedtime ritual would contain the easing of fears and the notion of sweet dreams ahead.

Instead, photos were taken, prayers were issued, and we are once again reminded of the mixed emotions we know the morning will bring.

The thunder outside echoes our inner fury and angst.

We hope the rain relieves the heat and our morning medication subsides our worry for another day.

In a Field of Horses…

In a Field of Horses, be a Unicorn.

May you always be a Unicorn, following your spirit animal …