Translation

With much happening and yet nothing all at once, I smile and log on to Facebook.

I am sad to read about another diagnosis across the ocean in Italy, but I am in awe that her words in Italian were translated for me in English.  Unfortunately, the disease keeps spreading as does its global awareness.  Language and cultures are neither a barrier nor a shield.

Our medical advisement can vary state to state, region to region, and continent to continent.  However, our mission remains the same.

We are lucky to connect with one another patient on a global scale, but our message should remain consistent and clear.

Tonight, I will sleep well knowing that more cases and more children are being evaluated, treated, and diagnosed.

Now… we continue to search for more wisdom and effective solutions to assure a better tomorrow for us all.  Italian, French, English, American, and everywhere in between, we are hear and we are working hard.

Translation = Gratitude


Save the Date!

April 5, 2018

Designer Bag Bingo

Together, we can…

Ralph Waldo Emerson once said, “cultivate the habit of being grateful for every good thing that comes to you, and to give thanks continuously…” This week, I have given thanks continuously.  I am still in shock of the overwhelming elegance, promise, and love felt at Valleybrook Country Club on Friday night, November 25.

Maybe it was because the event followed Thanksgiving?  After all, Thanksgiving is a time to reflect on the year that has passed and all the blessings in your life.  During Thanksgiving dinner, Kelsey said that she was grateful for one thing.  She said, “I am grateful for tomorrow night.”  Grateful seems an understatement.  My family fought back tears at her sentiment because we realized that she is already aware of kindness and gratitude at five years old.

I encourage both of my children to stay positive, give thanks, and count every blessing.  It seems that they are noticing and applying the cultivation of gratitude in their day to day lives.  For that, I am grateful.  

I think back to Friday evening with wonder.  I stood before the guests in absolute awe of the compassion and warmth that everyone had for Kelsey, our organization, and our cause.  We are still overwhelmed by the support and generosity shared at Valleybrook Country Club.  The collective efforts of the night helped us raise $11,000.  

The support we received on Friday evening both fueled our mission and strengthened our purpose.  We are committed to raising awareness and finding a cure.  This week, we are one step closer to those goals.  We are grateful beyond measure.

In closing, Helen Keller states that “alone, we can do so little.  Together, we can do so much.”  Kelsey’s Kaleidoscope, Inc: A New View for PAN is just getting started.  We are on a mission to raise awareness and find a cure for Polyarteritis Nodosa and all affected patients.  Our affected patient is grateful for you and so are we.  Together, we will do so much.  

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Scars? You are Beautiful!

Before I was a mother, I never pictured how I would endure a cut, a scrape, an illness, a broken bone, or a stitch.  I just hoped that I would find the strength if I was ever faced with a challenge because that is what mothers do…

This morning, my five year old blind-sided me, though.  

We were cleaning her deep wound and changing its dressing, which remains an open sore both physically and mentally of her most recent biopsy.  Her puffy, steroid-full face, started to stream with tears.

“What is it baby girl?” I questioned full of concern.

“How long will I be covered with a bandage here Mom?” she asked with a deeply concerned stare.

“Well, when we visit the doctor, she will let us know.  For now, we will keep it clean and covered, OK?”  I replied thinking that I aced it on the mom end.

“Well, that leads me to my worry, Mom,” she continued with concern and curiosity.

“Oh, (gulp of fear) what is it babe?” I asked hoping that I was equipped to answer the next few words she uttered.

“I can think of two ways the kids will view me when they see this wound, Mom.  They will either think that I am a monster or a fool.  I don’t want to be either.  (She then completely burst into tears)…  What other five year old has this gross part of her leg but a monster or a fool?” she stated with eyes of awareness and fear.

I stood absolutely speechless for a moment (an odd and difficult stance for me typically) to carefully consider my words and the weight they would carry.  This was the first time through all that Kelsey’s little, scarred body has endured that she has been keenly aware.

“Kelsey, when I look at you, I see a girl with a battle wound, one of many that represents courage, strength, wisdom, and beauty.  Neither monster nor fool has qualities like that.”

Silence and deep thought ensued.

Our eyes locked before we shared a silent, warm embrace.

I thought about this conversation all day long.

When I picked her up from school, she was beaming with a grin from ear to ear.

“I am SO happy, Mom!  Today, I opened up to my friend about my fear.  It was difficult to talk about with someone, but I learned that this friend is a true friend to me.  Do you know why?”

“Why Kels?” I asked feeling both proud and terrified.

“Mom, she said that I was really great the way I am, even with stitches.  She made me so happy because she said that I was not a MONSTER or a FOOL.  Isn’t that SO great?”

I balled my eyes out for the duration of our drive over this two minute conversation, realizing just how much we all need to feel accepted and loved.  I did not ace the early morning kitchen conversation because I am not five.  This much was clear to me.

However, I can reassure her, encourage her, and do everything in my power to empower her.

I also have to remember that she is five.

The next day, another child made Kelsey feel upset and worried in school.  Kelsey’s trusted friend shared Kelsey’s secret and told another little lady about the scar.   Kels was scared about what everyone would think.   I reassured her, encouraged her, and did everything I could to empower her once more.  

“Kelsey, you are courageous, strong, wise, and beautiful.  I heard a song today that spoke to all of the ways you feel right now.”

I played Alessia Cara Scars to Your Beautiful and together we sang, “You don’t have to change a thing, the world can change its heart.  Scars to your beautiful.  Scars to your beautiful.”