Comfort and Love

As our time home continues and summer looks different, we continue to clean and move through memories. Cleaning Kelsey’s stuffed animals was a journey that took an unexpected turn. She is quite good at cleaning and holding onto memories without specific belongings.

However, when it came to her stuffed animals, she surprised us. We started small by donating a few items when the COVID shutdown occurred. Slowly but surely, we began to clean out other belongings and personal items. We recently came to a small corner that seemed like any other.

This group of items appeared like her other favorites. Instead, we learned that each one held a memory. The first was a monkey bear. This tiny blanket/rattle combination has become a new favorite. We discovered that it was because it has been keeping her calm since she was a baby. Next was Violet, the singing LeapFrog toy that she snuggled with as a toddler. As Kelsey sat through much of her toddler time because she had trouble moving, this singing purple bear occupied her time.

Then came the teddy bears. “Remember this one,” she said as Brown Bear surfaced with the hospital tag still on his right arm. “Remember how I missed Brown Bear day in Kindergarten so this bear kept me company instead because he’s a brown bear.” It was stated matter of factly with a hug. “I love this one,” she concluded.

We more than remember that day…

With each passing bear or stuffy, a memory of Kelsey’s journey was shared. Instead of looking at these memories or moments with sadness, they were approached with comfort and love.

Be Brave. Approach your moments and memories with comfort and love today.

Wednesday Worry

Four years ago, we started this journey and 208 weeks have passed. Some weeks were beautiful, many were difficult, and so much has changed for us all.

To commemorate four years of raising awareness, researching, collaborative efforts, injections, appointments, and bravery, here is a glimpse at our first effort to share our story. Here is a repeat of our first entry, Wednesday Worry.

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This morning, we injected our daughter with life-saving medicine.  For two years, we have been doing so.  We have lost sleep, weight, and what seems like our sanity.  How can we loathe something that helps our five-year-old walk without pain?  It is our Wednesday worry and one we are ready to talk about with whoever wants to listen.

Mary-Claire King changed our lives by identifying the BRCA1 and BRCA2 breast cancer genes that have become household names.  Today, we spoke with founder and president of the DADA2 Foundation, Dr. Eugene Chambers, an accomplished doctor and father of two children with the recessive genetic condition DADA2.  Along with being diagnosed with PAN, Kelsey has the genetic condition DADA2.

We are committed to raising awareness and finding a cure for our children and those we have yet to meet.  As BRCA has become a household name, so should DADA2.  November 11, 2016 will mark a historic day as the Inaugural International Conference on Deficiency of ADA2 will bring this vision closer to reality.   Physicians, researchers, and families from around the globe will gather to share stories as well as diagnosis and treatment options moving forward.    

One phone call today made our Wednesday worry seem less worrisome.  We hung up the phone overwhelmed by the unfortunate and fateful nature of our call.  With a will, there is always a way…

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Stay safe. Be brave.

Guest Blog – Sort of Back To Normal

Kelsey wrote a guest blog today.  Be brave, stay safe, and enjoy.

“Today I want to say I have felt closer to my family than I ever have before.   I wanted to tell you because you might think it is too much time away from other people.   You may be sad.  You may be lonely.  When you really think about it, you are spending quality time with family that you didn’t get before.  Look on the bright side, restaurants are opening inside and outside for dining.  Be kind.  Be brave.  Be yourself.

If you really get into it, life is getting back to normal but you still have to wear a mask.  It is a good thing because people need to start feeling happy.  They probably need time away from home.  It is a good thing that you can go out and/or stay in.  Life is sort of getting back to normal.   The good thing for me is that I always have a family to see and a car to see them.  I hope you had a family to see, too.   Now that things are a little bit back to normal, enjoy it. I cannot wait to go to a restaurant and EAT!   My family is not ready just yet, but I hope that you get out and can finally go somewhere.”

Be brave and enjoy.

Be a Light

As virtual graduation ceremonies commemorate the year and reopening phases begin, we continue to hope for the future and 2020.  Bright spots have started to appear.

Today, driving slowly as Be a Light played on the radio, a car was pulled over onto the side of the road.  A woman was standing in the middle of the road holding out her hand to stop.  As the lyrics played, “…be a light” she slowly walked across the road.  Next, it was clear.  This kind woman was carefully placing a turtle onto the grass at the side of the road.  She was freeing a turtle who was stuck in the middle of the road.

This small act of kindness was a glimmer of hope.  She was a light.

Look for the good.  Save a turtle.  Be Brave.   Be a Light.

Difference

Difference is always celebrated in the community of a rare disease family.  Often called zebras for their unique traits, we embrace differences here.

Kelsey mentioned that she had a new song in her head.  She wrote the words for me and has no idea how remarkable they are right now for our world.  Children are our future and our future looks bright tonight…

Still a work in progress, but the current chorus:

Difference

“Difference is love.

Difference is pure.

Difference is power.

Difference is a thing that can never be taken apart.”

Be brave and celebrate your difference today.

Choose Love

It has been hard to find the words.  It has been hard to face the day in 2020.  Masks are worn and isolation is felt all around.  Yet as America slowly reopens, one angry thought overshadows even a pandemic.  An angry thought was felt nation-wide this week and our hearts feel it.

In the first week of June 2020, we are saddened.  We are vulnerable.  We have fear and anger at times in our hearts.

Over the course of these recent days, many families and individuals have come to mind.  Scarlett Lewis is the most recurring voice because she personally knows the pain caused by an angry thought.  Her inspirational message and social-emotional program were developed because of tragedy from an angry thought.

When Scarlett speaks, she always points out that her son, Jesse, lost his life as a hero at Sandy Hook Elementary because of an angry thought.  Scarlett has reached a global scale with the Choose Love Jesse Lewis Movement.

In the first week of June 2020, let’s think like Scarlett.  Let’s Choose Love.   If love is all we need and our actions are driven by love or anger, why can it be so hard to Choose Love?

Scarlett, keep spreading your message and inspiring others to Choose Love.

Reflect.  Hope.  Be Brave.  Choose Love.

Wicked Warriors, Win-Win!

Stronger and braver, The Wicked Warriors stand together to make a difference in their community.

Contact us to donate clothing and items you have recently cleaned out to support the Wicked Warriors and Kelsey’s Kaleidoscope, Inc. TODAY!

Thank you for your generosity and support.

Be Brave, Wicked Warriors!

 

Practice Injection Exam

“Tomorrow, I have a major test,” Kelsey said worried before bed.
“What is your test on?” I ponder in our world of virtual learning…
“Injecting a needle properly.  Don’t worry, it’s on a dummy, code word doll (said with a wink).  It’s practice for when I am a doctor someday.  I have to start learning now,” replied Kelsey with full sincerity.
She typed a list of all the necessary steps and practiced each step on me to ensure accuracy.  I gave her an A+.
Our talk continued with life goals and the innocence of youth, a turn occurred.  “Should I be scared of COVID?  If I became a doctor and the emergency comes back, how will I help patients and worry about me?”
When the day to day “normal” has become routine, moments bring you back…
Be Brave.  Stay Strong!

Wicked Warriors, Stand Strong

A few months ago, a philanthropic group of women were on the soccer fields with news of an organization that ended abruptly after a decade of success, love, and teamwork.

Stronger and braver now than in the past, this tremendous group of warrior women could not be stopped!  They formed a new alliance and stand together as The Wicked Warriors to make a difference in their community.

This week, The Wicked Warriors voted on their inaugural charitable selection.  Though we are in uncertain times and the season of dragon boat racing may not commence as planned, these warriors voted and selected our organization to begin their quest to make a difference.

We are grateful that such a brave and dedicated group of women selected us.

Thank you for your support and for showing us, love.

Be Brave, Wicked Warriors!

Math the 4th…

May 4th was a beautiful day!
Our Second Annual Golf Outing was scheduled and postponed for safety.

May 4th came and went.
It was a beautiful day, it would have been a gorgeous day for a golf outing.
To all of our supporters, we thank you!
Our new distancing leaves much to be determined, but much we are grateful for, too.
When it’s safe to return to normal,
We will be on the course for our cause!
Stay safe and be brave until then..