New View for PAN – Page 14 – Kelsey's Kaleidoscope

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!

BRAVE

Brave. Defined in so many ways and displayed by so many of us, young and old each day.

Kelsey recently read the book, Born Just Right . She could not put it down. Jordan’s story and her family’s journey is vastly different from ours, yet similar in so many ways. Kelsey felt inspired to do something for herself and her disease after reading Jordan’s story because Jordan is making her dreams come true.

Kelsey wanted to find an outlet and let her creativity shine, too. For weeks, Kelsey wrote and drew ideas in her journal. Kelsey was ultimately motivated by her new love of hand bands. Her brother is also wearing headbands these days, especially those he sees on @bryceharper3

BRAVE headbands were designed and created by Kelsey. Kelsey will proudly wear hers to her first day of third grade today.

Kelsey’s brother will also wear his BRAVE band today to signify his unity and provide support and strength for his sister. He does not realize how brave he is each and every day, too.

Here is to a wonderful school year to learners of all ages.

Be BRAVE, follow your dreams, and let Kelsey know if you would like a headband. She would love to see you wearing one.

Tiny Pink Socks

The worry set in when the neurologist talked with us about the past few months and the difficult year Kelsey endured. “When is the follow up MRI scheduled?” she asked.

”We have not been asked to complete one,” we responded.

”Let’s get her in today,” she replied.

“In order to facilitate the scan, Kelsey will have to go in without sedation,” was next stated. Kelsey already faced six appointments before the MRI was scheduled and fasted most of the day as a result. Tired, hungry, and worried we were. But we smiled and said, “Of course.” Then the worry truly set in…

As the pulsating vibrations and waves began, Kelsey was given headphones and selected her music. Easier and Here with Me will never sound exactly the same…

Two tiny pink socks captivated our attention for the forty five minutes to follow. One foot remained straight and steady as the other nestled over top. They remained in that position for the duration of the scan. As popular songs played, the view of an eight-year child sitting still through the loud MRI was amazing. She knew it was important and she did it.

Tiny pink socks coupled with immeasurable strength made a routine scan an incredible accomplishment.

Our follow up showed no new damage, and our concerns dissipate for now.

@kelseys_kaleidoscope

Thank you

The whirlwind two weeks of signing books and talking about Kelsey’s injections was busy but meaningful. Friends traveled long distances, family came to support, and new supporters showed their interest in our cause. We are so grateful for each and every one of you.

Thank you Mary Wagner, Krystal Almora, and Albert Almora, Jr. for your love and support. We are beyond grateful!

#chasingthecure @krystal_almora @kelseys_kaleidoscope #kelseyhatestheneedle