Leaving His Mark

Recognize this boy?

Yes, that is Little J.  Unbelievable video right?  We'll talk more about it at the end of this post.  The story behind how I learned about it is amazing.

I am a sharer.  I am open and honest about my life, challenges, blessings, feelings and emotions.  I have been so transparent about Little J's Journey for two main reasons:

1. I hoped it might bring a little understanding about my unique path as a special needs parent and Jayson's unique role as a child with complex medical conditions.
2. I hoped that in some small way our family could help another family, group, or population going through similar trials or circumstances simply by helping them feel like they aren't alone or by bringing awareness to a rare condition they share.

My writing, sharing, and transparency has overall been a positive experience.  I've met people from all over the world. Some share some of J's conditions, while others have children who do.  Some simply want to join J's journey and lift him up in prayer.  Others have had their hearts stolen by his innocence and bravery and can't help but be loyal followers.  Never during this journey did I dare to dream that Jayson's face and story would be shared in a very big way.  Never did I imagine that he would be given a voice and that he would touch hundreds of thousands without even being in their presence.  We were given a very unique opportunity, one that has lifted us up and touched our hearts deeply.

A friend of mine in a FB support group for one of Jayson's conditions is the founder and CEO of the organization Rare Disease United Foundation located in Rhode Island.  

http://rarediseaseunited.org/

Through a series of events, I learned of a unique exhibit her foundation hosts for children who are rare and undiagnosed.  She asked for a picture of Jayson so that perhaps an artist could paint his portrait to be potentially displayed in this exhibit.  I was excited and honored, but I had no idea what really would follow.  I received an email from her about Jayson's artist Lucas James Xavier Kolasa, who is world renowned.  He painted the entire portrait, symbolically, drop by drop using a medical syringe. My friend told me the painting brought her to tears and she couldn't wait for me to see it.  I received another email from her that I could hardly believe.  The painting was so phenomenal, it was chosen to be the cover portrait on the cover of the exhibit magazine.

See some of Lucas' work on google images

Finally the time had come when I got to see the painting through an emailed image.  There were not words.  Just tears.

A talented and famous artist stared at my son's picture, poured over his features, memorized his lines and details, and highlighted his sparkling eyes and innocent soul.  He clearly depicted every quality of my son in a painting, without having ever met him.  He knew Jayson.  He saw him as he really is, and he made it possible for the world to see him too.  He was my son's mouthpiece through a masterpiece to tell the world about rare.  I was humbled and honored to share my son in such an amazing exhibit.

The exhibit's focus was on helping medical professionals look beyond the diagnosis, and that was how it earned its title "Beyond the Diagnosis."  Little J is more than chiari and craniosynostosis.  He is so much more than seizures and complex everything.  He is not a frustration or a complexity.  He is a beautiful human being who has a lot to offer the world.  This exhibit allowed current and aspiring medical professionals to see that.

I was asked to write a couple of paragraph summary about Jayson that would accompany his portrait in the exhibit catalog.  Wow.  That was a daunting task.  It would be very difficult to write something that could match up to that beautiful painting.  I kind of wanted to write, "The End." and call it good.  I have written down Jayson's diagnoses and conditions a million times, but that wasn't the purpose of this exhibit.  I had to write about Jayson, the person.  That may not seem challenging to some, but it is difficult to capture my amazing son in words.  Most people who write about their kids describe what they do and what they like.  Jayson's cognitive and developmental levels are still at that of a baby or a very young toddler.  It didn't seem adequate to write a couple of paragraphs about how Jayson likes to eat his fingers and loves watching Yo Gabba Gabba.  Nothing I could think of or write seemed adequate.  The words I wrote didn't capture who Jayson really is and they didn't pair well with such a fabulous piece of art.  So I decided to summon my inner artist, the writer, and I wrote a poem.  It was a little unconventional, but my friend loved it and so it was printed in the program.

This is the story of
Jayson, Little J, Jayse, JayMan, Jayse Face, Jasey, Jay.
Super J, Miracle Boy, Crazy Crazy, Trouble, Hero, Smarty Pants.
Chiari Warrior, Zipperhead, Cranio Kid.

Notice him.
Observe his scars and you'll see a boy who is
Rare, Complex, Undiagnosed, Complicated, Unique, Unknown.
Special, Angelic, Extraordinary, Strong, Courageous, Brave.
At-risk, Fragile, Compromised, Susceptible, Vulnerable.

Fall in love with him.
Stare into his eyes and you'll see this child is
Determined, Relentless, Tenacious, Persistent, Stubborn.
Smart, Curious, Cautious, Innocent, Creative, Bright.
Silly, Playful, Sweet, Loving, Cheerful, Kind, Mild.

Learn about him.
Open his heart and you'll see that he loves
Green, Cars, Trains, Wheels, Books, Dragons.
Walks, Baths, Swings, Horses, Water.
Movies, i-Pad, Television, Music, Yo Gabba Gabba.

Remember him.
Watch him change with world with his
Dazzling eyes, Luscious locks, Engaging smile.
Heart that speaks, Soul that connects, Spirit that teaches.
Love, Strength, Bravery, Legacy, Example.

Diagnose him.
Help him live a long life full of
Meeting friends, Making memories, Vast experiences.
Running, Jumping, Skipping, Singing, Whistling.
Happiness, Comfort, Peace, Confidence, Healing.

Be stronger for knowing Jayson's story.
Be better for understanding his purpose.
Be known for making a difference.

Visit the exhibit at: http://rarediseaseunited.org/programs/beyond-diagnosis-art-exhibit

Purchase a catalog with Jayson on the cover at:  http://shop.rarediseaseunited.org/

The exhibit took place at Brown University for the entire month of February.  It was well received and had an unprecedented attendance of 100,000 people at one school in one month.  Amazing.

Little did I know, my beautiful son's face would be not only on the cover of the magazine, but also on the flyers and posters and in the media.  I couldn't believe it.  What an incredible opportunity for Jayson to touch others and leave his mark on the world.

It was such an enjoyable experience, RDUF is hosting a second exhibit this summer!  It, too, will be in Rhode Island but hope we might be able to attend, somehow.  I can only dream of the emotions of seeing my son's portrait in an exhibit hall, being admired by attendees.  I cannot imagine the emotions of meeting his artist who captured J's soul, essence and persona on canvas.  A girl can dream, can't she?!

 The exhibit has been over for about a month now, and all of the hype and excitement has died down.  For those who are following our journey, we've had some big changes in our household recently.  Read more about them HERE.  We also had Jayson's second major cranial surgery two weeks ago, a bad cold and cough last week, Strep throat this past weekend and a stomach virus go through our home this week.  It has been ROUGH.  I felt defeated this morning and could not even force myself to get dressed.  So I did what any other depressed, ill, house-wife would do---get on Facebook.  On my feed I saw RDUF had posted a new video and I was anxious to watch.  My phone wouldn't play it so I had to wait until I got to my computer.  I looked it up and noticed the name "Jayson" in the title... "Meet Jayson, he's just like us".  Wow, cool coincidence.  I was even more interested in watching it.  It was in the moments that followed that I had one of the most unique experiences imaginable.  It is not every day that a parent sits down to watch a shared video on social media to realize that it's about her son.  It is not often that a parent gets to read each conversation box identifying the likes of the character in a video and think, "Hey, my son likes those things." and to read the other text boxes with her son's nicknames one at a time until she realizes undoubtedly this beautiful video was inspired by her son.  There are not words for the emotions I felt and the overwhelming swelling I felt in my heart.   I literally couldn't breathe. Wow, just wow.  There was no greater surprise in the whole wide world.  I did not know about it before I saw it today.  The information about Jayson, his likes and his nicknames were gathered from my poem.  I never want to forget this experience.


MY SON and HIS STORY are touching the world.  He is leaving his mark, without saying a word.  He is representing a very important population of RARE and educating and raising awareness around the globe.  MY BOY IS DOING THAT.  Wow.  Incredible.  Yes, it was my dream that Jayson's story would touch someone or a group of people, but I had no idea what was in store.  We are so very blessed to be a part of such inspirational groups and organizations full of people fighting big battles.  This is real life.  People are suffering, and action needs to be taken.  The medical world and otherwise needs to be aware.  These are real people with real feelings and real stories.  They matter.



YOU CAN HELP.  Spread awareness.  Read about their experiences.  Share their stories.  Promote and share Rare Disease webpages and videos.  Volunteer, donate, serve the cause.  CARE ABOUT RARE.  It really can and does make a difference.  More than you even know.







Media Coverage of the exhibit:

Article in the Rhode Island Journal of Medicine:

Article and web post by Brown University:

https://news.brown.edu/articles/2015/02/medart

http://www.browndailyherald.com/2015/02/20/med-school-exhibit-takes-people-first-approach/


News article by ABC6:

http://www.abc6.com/Global/story.asp?S=28049284

Video clip of the exhibits:

Ain't nothin better than watching you smile! <3
Posted by Rare Disease United Foundation on Sunday, February 22, 2015

News broadcast by ABC6:

Awesome!! Bring awareness to these families <3,Happy to have participated as an artist <3
Posted by Jennifer Gillooly Cahoon on Friday, February 6, 2015