February 2017 – Kelsey's Kaleidoscope

The Art of Kite Flying

Saturday was unseasonably warm. The sun was shining and kids were outside gleefully playing. The kids rode their bikes, enjoyed a soccer game, and even played a few rounds of the classic, hide-and-go seek. It was glorious.

Smiles were wide and we all shook off some winter blues. The timing could not have been better.

After a while, Kelsey emerged with an unopened kite box. She was on a mission to fly her kite. Step one, open the layers of tape and packaging to locate the kite and its many components. A multi-color butterfly appeared before our eyes at completion. Kels was overjoyed. The only problem I saw was a lack of wind…

Kelsey saw no problem at all..

She eagerly and patiently helped me affix the thread and metal springs. It seemed that she found joy in every step of the process and squealed with delight as the flat material transformed into majestic butterfly.

Truth be told, Kelsey’s daily injections have been tough to endure this week. We are all ready to find a new routine. Though we trudge through the motions because of their importance, we feel a little defeated by 7 A.M., too.

Thus, the return of the sunshine and warmth did us all a world of good.

We still had to fly our kite. And when Kelsey is on a mission, there is no stopping her. Persistence could truly be her middle name. The child will not quit.

Every new attempt to fly made her focus even more on her goal. She lengthened the rope, held it tightly, tried, and tried again.

Her determination inspires me. Her strong will found a way and though it was only a few yards of successful flight, her joy was infinite.

Saturday, I thank you for the breathe of fresh air that I desperately needed.

Looking for a fun and festive St. Paddy’s Day event? Join us for a St. Paddy’s Day Happy Hour on Friday, March 17 from 5-8 P.M. at Philly Sports Bar for games, drink specials, and fun. Win some liquor, share a toast, and help us raise money for our cause. Save the date. More information will be posted in the coming days.

Warm Sentiments of the Shawl

Warmth. When someone is so genuine and kind, sometimes it brings me to tears.

I had that experience tonight. A colleague that I have known for a few years, one who ALWAYS lends a kind word or a beaming smile, stopped by my office. She asked for my permission to give me a gift for Kelsey through her church ministry. She described the ministry, and I was touched. The sentiment was genuine and kind.

The next day, she delivered two prayer shawls. I did not even have time to process the gesture when she dropped the bag off to me, nor did I look closely at the contents. As I left for the day, I smiled as I read the tags, full of joy.

However, when I came home and shared the shawl with Kelsey, together we put them on and both burst into tears. We were truly overcome with a presence and a connection that words cannot explain. The adult size is a purple hue that matches our foundation’s logo exactly. I actually had chills when I gently removed it from the bag. The tiny-version is a lighter shade for Kelsey. They are simply beautiful.

Kelsey said that she had never felt so warm and just did “not know what to say over a gift like this.” Nor do I Kelsey…

These intricate shawls feel like a blessing and a warm hug when you surround your shoulders with them. Hopefully, Kels is watched a little more closely now with this draped in her room. She wants to wear hers every night and pray that her needles go away.

I will do the same.

To the ministry and the thoughtfulness of a wonderful woman, words enough do not say thank you. However, I will say them anyway, thank you!

Courage when you least expect it

“Strength and growth come only through continuous effort and struggle.” -Napoleon Hill

Almost exactly one year ago, my mother convinced me that silence was not the answer. With the help and guidance of dear family members, Kelsey’s Kaleidoscope, Inc.:A New View for PAN was born.

Part of me feared the perception my family would receive after we revealed the rare disease in our home. Part of me feared that people would look at Kelsey differently because she has a rare disease. The funny thing is, if anything, people are more kind and generous than I ever could have dreamed.

Last week, the ten-year-old student who joined forces with his family collected $300 at his stand. He stood in a crowded room full of parents, families, and students who were there to understand the world of business: how to create a business model and successfully see it through. As I looked around the variety of business models and concepts, they were very similar in every single way.

Only one had a group of family members adorned in pink, a band of bubble-gum goodness. Selfless, sweet, and kind. Only one student that night showed the world that his family raised him to give back, expand his horizons, and fight for what he believes he has the power to change. He did not make a single penny for himself or his time, but he was beaming with pride from ear to ear.

That $300 is going towards a cause far greater he can likely imagine. We have had some exciting happenings over the past few weeks. Soon, we will embark on our mission to find the cure. Every single penny earned and piece of bubble gum sold will go towards finding that cure.

What started one year ago as a dream is turning into reality. If not for my mother supporting me and urging me to speak about the fight I was only living inside, we would not be on our way to finding a cure.

Today, the kindness, the generosity, and the selfless acts of others have helped us begin that mission. When a ten-year-old young man “gets” it, you can not help but get choked up inside.

Courage has the power to heal and change lives. A ten-year-old and his family showed me how much good there is in the world around us. Sometimes, we have to open our eyes a little bit wider to see it.

Selling Kindness and Giving Back

This evening, soon after injecting the second medication of the day, we will smile and walk around a local “market.” This market is a school project for future business entrepreneurs to reveal a business plan and “sell” a variety of products to reflect their business model. It is a fabulous learning experience. However, there is much more to this market for my family.

About a month ago, one of Kelsey’s teacher reached out to me regarding this event. She wanted to let me know that her ten-year-old son would be participating in this event and donating ALL of his proceeds to Kelsey’s Kaleidoscope, Inc. Maybe it is not the best business model, but it certainly a child who understands compassion, charity, and community.

Touched. Grateful. Overwhelmed by kindness.

The tumultuous nature of the past few months has also created a natural break in fundraising. However, my heart melts to know that a ten year old young man did not stop thinking. This incredibly generous ten-year-old boy has never even met Kelsey.

To Kelsey’s teacher for sharing Kelsey’s illness with her family and raising a young man who would think more of someone else than of himself, thank you. To a young entrepreneur who took it upon himself to bring a bit of sunshine into the sunshine of our lives, thank you. If you happen to stop by the event this evening and inquire about Kelsey’s Kaleidoscope, Inc, thank you. It is the support and the spirit-lift from those around us that keeps us strong even when we feel that we are hanging on by a thread.

The sleepless nights, the relationship stress, the avoidance of public settings and birthday parties due to the vast array of germs, and everything else good and bad that January has been comes to an end this morning as the sun rises to February.

This month looks hopeful and bright already.

Thank you, February and thank you to an amazing ten-year-old and his family for sharing the love…