#brave #courage #thisishowIbrave – Kelsey's Kaleidoscope

Routine Wishes

The simple and routine can be the things you wish for most with a rare disease. In fact, the routine and normalcy are often what you dream about when pain strikes fast.

Migraines, eye movement, eye strain, constant nausea, and no answers was a recent update we received from another patient Kelsey’s age. She is currently experiencing daily episodes of pain and discomfort without relief or answers.

Today, as we look at Kelsey and her treatment plan, we continue to be grateful while it works for her. Talking to this family made the ever-changing nature of a rare disease deeply troubling. We learn from each other and hope our doctors can safely manage all symptoms to give our children comfort and relief.

We count our blessings every day and hope that this family can soon look back on this difficult time. Our family efforts to further fund research and awareness are always on our mind to help those we know who struggle.

Be brave. Be grateful.

Rare and Beautiful

Rare is an adjective defined as unusually great or excellent. Rare can also mean few and widely spread apart.

When rare is used to describe a disease, it scares you. You lie awake thinking about it. You constantly worry and you want to do everything you can to foster uniqueness in a way that does not define you as few and widely spread apart, but one that makes you feel unusually great.

Any hospital visit or stay is a reminder of the rare you want to avoid.

But moments shine with hope and a glimmer of the unusually great and extraordinary, too.

This weekend, Kelsey was a shining example of beauty in its rarest form. Confidence and poise surrounded her as she chose to wear her soccer uniform to her special dance with her father to make the quick change required an easy one for her. She simply placed a tutu over the uniform and that was that.

What started out as a joke to save time ended up being her decision.

Rare is simply magnificent sometimes. We are also beyond grateful when a moment celebrates Kelsey’s rare and defines her in all of the right ways.

Be brave. Be rare. Shine on.

#RareDiseaseDay2022

Imagine that all of a sudden, your world stops.

Your family’s focus becomes a single, life-threatening topic. Home becomes the only place that is safe or manageable. Your physician is on speed dial. Doctors’ offices are the only place you have been in a while.

You monitor symptoms, wondering if one will lead to more. You think, “This will pass soon,” but weeks, months, even years drag on. Your only hope for change is out of your control, resting with specialists. Questions linger.

Rare Disease Day is celebrated each year on February 28 to raise awareness and celebrate the many faces impacted by Rare Diseases.

Every day life with a rare disease can be challenging. A rare disease during the pandemic has been something new and different. As we hope our global pandemic comes to a close, remember that rare diseases surround us.

Our Kelsey is our reason and our rare. We love her and thank you for supporting her rare.

#RareDiseaseDay #BeBrave

Wings – 1.22.22

Comedy for a Cure – Next week!

Join us for a night of COMEDY and laughter. Save the Date for November 19, 2021, 7:00 PM – 11:00 PM for our sixth annual Comedy for a Cure! Featuring a Comedy Line Up sure to keep you laughing!

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Your life is like a Kaleidoscope

The food recommendation is something new. We settled on an order from a local restaurant we rarely order from in the area. Our expectations were low, but we were happy to try something new.

The cookie that ended the night was simply perfect.

We were all amazed at this good fortune. The vibrant, ever-changing life we see is one we are proud of. We approach the start of a new school year and another unknown surge of the pandemic with fear and gratitude.

We wish you well and the colorful light that shines from our kaleidoscope.

14 years and counting

Love is patient. Love is kind… The words that ring true fourteen years later today. Love is all of those things and more. Love is truly remarkable when you think about it. The feeling you have to know that you have a partner that loves you unconditionally for better or worse.

Each day, we are grateful for each other.

Marriage is hard and challenging. When you find the one we feel fortunate to know that we have, we want to embrace it and share it. Sometimes, we need to walk away.

Whatever the case, we love and work through it.

We danced the tango and started our entry into married life with that dance in 2007. We have been dancing together ever since.

We could not have dreamed of the children we would have, how quickly they would grow, and how the pandemic would bring us all closer together.

We differ(ed) in opinion and comfort, but we managed to listen and grow.

We lost a loved one, and we needed to support each other and our family through this loss. You hear about this and read about it but cannot explain it or understand it until you live it.

We laughed, and we cried. We were grateful for the blessings we have.

We hope. We hope that you have someone in your life who sets your heart on fire, sees you at your best and feels proud, and comforts you at your worst.

To love, to marriage, and the happy pursuit of finding yours.

Happy 14! 🙂

Wonder and Worry

The Olympics close, and school will soon be here. Where has the summer gone, we wonder? While the warm air still surrounds us, the fall winds will soon be in front of us. We look ahead, and we worry.

We worry about the next few months. We worry about vaccinations, health, and masks. We worry about Kelsey’s health and the challenges the next few months could bring. We worry about changes for our son and how we will face them.

With all the worry, this week, we looked closely at the worry surrounding us and found something else more powerful, wonder. We worry, yet we wonder and notice that wonder surrounded us often.

We wonder how our world is in this state. We wonder how the pandemic surges on in a manner potentially worse as we face another school year. We wonder how we will do it. We wonder how our kids will do and how they will thrive.

We realize that we will be resilient, and we will make it through stronger once again.

Kelsey wondered about creating a new game. We worked on a few different trials, and eventually, she made a fun game with patterns, multiplication, and dice. In her spare time,

Kelsey also started writing a book called “Adventure Awaits” to capture her imagination and the bright future she dreams of in the days ahead.

Kelsey continues to sing and write songs about the summer, her joys, and her fears.

We wonder how our worry turns into wonder when we look around to find it.

May you find joy and wonder today.

Watching the Olympics – By Kelsey

Watching the Olympics is really something. You go through a set of sports and you watch athletes push to their limits and change their position. To see people who show off their skills and what they can do at such a young age is just amazing.

When you watch the Olympics, you think, “one day I want to be like that.” For example, when I was watching swimming, Bobby Finke was in fifth place. Like a rocket in two races, 800 meters, and 1500 meters, he took first place in the final 50 meters (which is the last lap). That inspires me. That was amazing. Fight hard like Finke…

The Olympics makes me feel like, in life, sometimes you have a bad day. But that day can turn into a great week, even the best week of your life.

Take Simone Biles. She chose herself instead of the Olympics or a medal. What courage. And then she got back up on the beam and won a bronze medal. Think about what that medal must mean to her and how she felt standing there on the podium. Suni Lee, Jade Carey, and all of those women who crushed it. They are awesome.

They amaze me.

That tells me that everyone who is not 100% can be 100% tomorrow or in the generation of tomorrow. This is why I think the Olympics are a great competition to watch. Be amazing at whatever you do today.

@robert_finke

@simonebiles

@jadecareyy

@sunisalee_

#teamUSA

Pride

As parents, we have moments of great pride when our children succeed. The past week has been an exciting one for Kelsey’s brother. He attended his first “graduation” of sorts, won accolades, received and signed a yearbook, and dealt with conflict. His hard work, effort, and dedication in an uncertain year have been commendable. His academic achievements have amazed us during his time in elementary school and showcased the start of a bright future ahead.

However, his ability to learn by example and work through challenges has been something we are all proud of him for this year. He has learned life’s hard lesson that it will not always be easy, but it will be worth it in the end. He has learned how to be brave. He has learned that grief hits you hard at times, and it is a process. He has learned that hard work takes you far. He has learned that hard work is not always popular. He has learned that we believe in him. He has learned to believe in himself. He has learned that we are proud of him every day. He has learned that expressing himself can be difficult, but it is important.

The 2020-2021 school year has left its mark on many. For Kelsey’s brother, it was a year of growth, maturity, and resilience. A new chapter soon begins for him, and we are beyond proud of him.