7 YEARS OLD

Jadon’s diagnosis ripped our dreams up into tiny little pieces and tossed them to the wind.  SMA took our dreams and left us to hope for things that were merely expectations prior to those 3 letters entering our lives.

We have dreamed about milestones like living to be six months old, a year, and then two years.  Beyond 2 years was categorized as miracle territory.  Only 10% of kids diagnosed with the #1 genetic killer live to celebrate their second birthday.  While we wished for a miracle we prepared ourselves for disappointment as the odds were so heavily stacked against him.

With our dreams being reduced to such short sightedness you can imagine our surprised joy when discussions began about Jadon attending school.  Jadon was thriving and we started to dream again.  We allowed ourselves to dream about something we had truly given up on.

With that dream came a new worry.  We spent his first 3 years worrying the gravest of worries, but this one was new.

Jadon is different from other kids and his differences are somewhat less than subtle.  We worried how he would he be viewed by the outside world?  Would he make friends?  Would he be bullied?  Could he possibly be accepted?

All we ever prayed for was acceptance, but we have gotten so much more.

We have been blessed beyond recognition.  I truly hope our family is not even recognized as a family with a terminally ill child because he is living life to the fullest.

Jadon has not simply been accepted but truly valued.  The kids genuinely love him and that awesomeness brings tears to our eyes.

One day this spring Mrs Green read a book to Jadon’s first grade class about how everyone is good at something.  After reading the book the kids did an exercise where they paired up and told their partner something they are good at.  Being Jadon’s voice I struggled to come up with something these young minds would understand.  Most of the kids spoke of activities such as soccer, baseball, baking, or singing.

I settled on “Jadon is good at making others happy.”

To my surprise this brought the BIGGEST smile to his partners face.  With the most incredible enthusiasm she exclaimed “I KNOW!  EVERYONE wants to be around Jadon.”  Daddy had a little moment right there in class because she made me realize it really is true.  Kids fought to be Jadon’s partner all year long.  Rarely does someone walk by us in the hall and not say “Hi Jadon” or at least give a silent finger wave.  Kids are doing fundraisers in honor of Jadon.  They do class projects about SMA.  They have not simply accepted him but embraced him for all that he is.

Jadon turned 7 years old today and we have no idea what the future holds.  We will continue to take each day as it comes and only allow ourselves to look just so far into the future.  What we do know is that our son has been blessed by some amazing people: teachers, administrators, students, classmates, teammates, neighbors and strangers… all of them now friends.

Happy Birthday Jadon!  You are truly loved.

Pictures from The BUG RUN 2016

For more pictures of this amazing day visit the facebook page of our amazing photographer Shauna Renee Photography – CLICK HERE

 

The Fabulous Miss G, Forever In Our Hearts

Whenever we suffer a loss in our SMA family, it is hard.  And each one has its own affect on us.  We reside in a world that we wish with every fiber of our being didn’t exist.  A world where little ones become angels far too soon and parents have to say good-bye to their precious babies.  But this one, this one just crushed us.  Gwendolyn is very special to us as are Bill, Victoria and little sis, Eleanora.  Over the years and despite the many miles that separate us, an amazing bond, connection, friendship has grown.  We have celebrated with each other, worried and cried with each other, laughed with each other, lifted each other up, helped each other out and leaned on each other.  We have just been there for each other.

And Jadon and Gwendolyn?  Well, they were boyfriend and girlfriend.  Whenever Bug saw a picture of Miss G his eyes would get as big as saucers, he would purse his little lips and get major “happy belly.”  And when Miss G saw Jadon, she would bat those gorgeous long lashes and tap, tap, tap her finger.  He was her blue-eyed boyfriend and she was his fabulous Miss G.  Everywhere you look in Jadon’s bedroom, there is something from Gwendolyn.  Multiple pics that adorn his shelves.  The turtle she gave him years ago that to this day he insists is turned on at night.  The blanket that he loves to have his feet snuggled up in.  Valentine’s Day cards she made him.  Treasures she picked out for him during trips to Disney.  Pout-Pout Fish books.  Tickle Monster book.  She is there.

Whenever we would go out on adventures and Jadon got a souvenir, he insisted that Miss G would get one too.  Always something blue for him.  Purple for her.  Early in their “courtship”, Jadon found out that a little boy had given Miss G a flower while at a playground.  That simply wouldn’t do and he made sure Miss G had an even bigger purple flower from him.

To profess his love for Miss G, Jadon even got a little ink.

And it worked!

Earlier this year, I was blessed to be able to spend some time with Bill, Victoria, Gwendolyn and Eleanora when I traveled out to California for business.  It was magical – a moment when you hoped time would just stand still.  And as the sun began to set and night fell, I didn’t want the evening to end.  I wanted to soak up every second because I didn’t know the next time we would see each other again.  When we finally had to say our good-byes, I raced to my room to call Tony.  I told him we HAD to figure out a way for all of us to get together.  For Jadon and Gwendolyn to meet.  Unfortunately, that never happened.  Just one more thing SMA has robbed from our kiddos.

When Bill called early Saturday morning, our hearts shattered into a million pieces.  The wind knocked out of us.  How could this be possible?  My knees buckled as I crumbled into a heap onto the floor.  This is NOT supposed to be happening.  It simply wasn’t fair.

Ever since Jadon was little, he would randomly look into the corners of the room and jabber/chat.  We firmly believe he is talking to his angels watching over him.  Throughout the rest of the day on Saturday, we struggled with how to tell Jadon about his fabulous Miss G.  We desperately fought off tears anytime we were face-to-face with him.  As we got him settled in his room to begin nighttime treatments, we finally mustered up enough courage.  We told him we had some very sad news to share.  He looked at us very seriously and with his eyes said “Yes.”  We said, it’s about Miss G.  Again “Yes.”  We asked him, do you already know?  This time BIG, BIG “Yes.”  We asked, have you been talking to Miss G?  Another BIG, BIG “Yes.”  He had been chatting earlier in his room during his chill-time.  We should have known he already had a very special visitor come by to let him know she was okay and would be watching over him.  Even now these two have an incredible bond that will always be there.  We take some comfort knowing that the fabulous Miss G is continuing to watch over him and be with him.  

The world was a better place with Gwendolyn Strong in it.

The world is a better place because she lived.

We are better because of Gwendolyn’s life and we will always carry a part of Miss G  with us.

We will Never Give Up.

We are… G-STRONG.

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Jadon is SIX + a few weeks

Jadon is 6 years old…plus a few weeks.

Jadon turned six on the 25^th of June and a funny thing happened this year – we were busy.  We were busy LIVING life.  We celebrate our big hero every single day and we have always gone BIG for his birthday month, but this one kind of snuck up on us.  We forewent the big party for a gathering with a few of his close friends.  And what fun they had!

This year, we celebrated his birthday by going bowling – a first for Bug.  Afterwards, we all went out for pizza where he opened presents and then proceeded to take a nap…at the restaurant.  Phew, partying can sure wear a kid out!   The Saturday following his birthday was Bad News Bears baseball and for the third year in a row Jadon ran the bases with his team.  Following the homerun trot his team sang happy birthday to him at home plate.  This is definitely a highlight of the whole year.

 

The pure miracle of Jadon doesn’t come to mind on a day to day basis.  It is the milestones where we stop and look around at where we are.

SIX YEARS.

Three times the prognosis of SMA Type 1.  The really strange thing is that these days seem to be our best days yet.  We don’t like to say too much positive stuff in fear that SMA will rear its ugly head reminding us of its horrible power over our lives.  So, we’ll say it softly, just once…he’s doing awesome.

Jadon has completed kindergarten and will be entering the 1^st grade this fall.  He has friends from school, friends from baseball, and even has friends who come to read to him in the summertime.  Not to mention all of his friends across the country, ones he has met in person and others on-line.  He loves baseball, being outside, playing games, watching movies and rolling his eyes at his little sister’s crazy antics.  He is a six year old little boy.

 

A week before Jadon’s birthday was the national SMA conference which was held right here in Kansas City.  This was an incredible experience as we got to see many families we already knew and others we had never met.  There were many families who have been fighting longer than us, families who had just been diagnosed and families that look forward to one day seeing their loved ones in heaven.  It is something to see families at all these different stages of the SMA journey.

We have been fighting this fight for almost six years and when we hear someone say they just got diagnosed it takes us right back to THAT day.

On this day (July 16th) six years ago Jadon was 3 weeks old and we were yet to hear the words Spinal Muscular Atrophy.  We were yet to have our lives turned upside down.  We were yet to understand how strong our hero would have to be.  How strong we would have to be.  Jadon has been through a lot in six years.  There have been some extremely scary days that we thought would be our last but there have been far more beautiful days.  Days where his eyes sparkle just a little brighter.  Days when the faint giggle on his breathe is a little louder.  So many days that we thought we would never have.  So while the SMA storm rages on within our life we will continue to find new ways to “Dance in the Rain”.

This Saturday, Jadon is going fishing with his buddies…..another first.

The Birthday Haul

BUG RUN 2015 pics

The 2015 BUG RUN was held on April 11th.  We continue to be amazed at the turnout as well as with the overall atmosphere of the event.  The BUG RUN has become a gathering of the community and the support is nothing short of overwhelming.  From all of our sponsors to all of those who participate, the love for Jadon and the fight against SMA is evident.  Acts of kindness abound and one small example is the fact that all of Jadon’s Kindergarten class registered for the run.  An anonymous donor paid for those who would not otherwise been able to attend.  It is because of gestures like this that we are constantly talking about how blessed we are with those who God has chosen to surround us with.

We are already looking forward to next years run and looking for ways to make it even bigger and better.
SEE YOU NEXT YEAR!!

 

Jadon- “The BUG”

SMA Mommas and their Warriors – Kaden & The BUG

The National Anthem

I Run In Honor Cards
SMA Warrior & Angels

Patrick Fazio from Action 41 News & Rocket from 93.3 The Mix

 

 

 

IT WAS A VERY VERY GOOD DAY

 

When Your Legs Get Tired, Run With Your Heart

 Amy Vrban & Kristin Burks

WRITTEN BY AMY VRBAN
Race Director – Jadon’s Hope BUG RUN

I have greatly enjoyed seeing everyone’s pictures from the Bug Run yesterday! It helps me see all I miss and see the enjoyment that was truly had at this event! I was overcome with great emotion at several moments. Moments I could talk about all day, moments I will never forget, and some so powerful no words are required.

SMA. I never knew how much those 3 little letters would impact a life. In return the impact that life would have on an entire community. Jadon. I was asked 4 times yesterday why I think Jadon has surpassed life expectancy. I don’t have the answer. Certainly not medically. What I see is a beautiful child who teaches us to love one another, encourages us to come together and help each other. To help each other beyond our own friendship and boundaries. Jadon has brought a community together to fight for all childhood diseases. He shows us how to live without giving up hope and beyond limits. To live each day and be thankful for it. Because of Jadon new friendships and bonds have been made. More and more people everyday are seeing the effects of SMA and ways they can help a devastating, terminal disease, come to an end. Jadon’s hope. His parent’s hope. His family’s hope. My hope. Friend’s hope, our committee’s hope, the community’s hope, hope across the country, hope around the world. It’s spreading and everyone can help!

Jadon’s parents have an endless love and passion for their children which has spread into the Foundation. Inspiring and infectious. Their kindness, love, passion, and dedication will touch your heart and soul.

I am thankful for every single person who registered and gave their money to such a wonderful cause! I am thankful for the silent donations and those who continually want to give! Thank you to all our sponsors who are new and have given to the Bug Run for the 3rd year! We couldn’t do it without you! It’s overwhelming to say the least. People helping other people!

Spreading HOPE and awareness! I am blessed to have a wonderful committee who share the same passion! They are an amazing group of people who work so hard in different areas and in different ways but they all give all they have.

Every single volunteer! Over 150 volunteers came out to help and gave their time to help make this, a fun, safe, and enjoyable event. Thank you!

Pictures from the event will be posted in the next couple of days and I’ll keep you posted on that!

We look forward to the 4th annual Bug Run in 2016! Fun things are already being planned!

Look for us in the Old’s Settler’s Day parade in September! We’ll have the Bug Run date set! Please visit http://jadonshope.org to keep up with the latest news and happenings with Jadon and the Foundation!

In the mean time keep hope alive, keep fighting and running!
And remember; when your legs get tired, run with your heart!

A Difficult Reminder: Why We Fight and Why We Dance.

At every event Jadon’s Hope has hosted, we honor SMA kiddos from across the country.  These kids are the entire reason we do anything and everything we do as a foundation.  We feel it is incredibly important for our supporters to know who they are fighting for.  Simple cards showing bright, smiling faces that highlight very complex lives.  Faces of our courageous Warriors and Angels.

As we get caught up in event planning, inevitably these cards are put off until the last moment and it begins to feel like a task that simply needs completion.  However, the “burden of completing the task” is always overtaken by the honor of the fight.

There always seems to be that moment.  That moment when the work disappears and the shining faces touch our souls.  Suddenly, we understand that we are lucky to know these kids, to understand these kids, and so very lucky to fight for these kids.  We fight to make a better world for those fighting SMA and to one day see a world where SMA does not exist.

That moment often triggers the waterworks.  This year, the sweaty eyes were uncontrollable when one particular card was created.  Brianna has been a smiling warrior for each of our events.  We met Brianna on Facebook shortly after Jadon’s diagnosis and she was always a great source of information and overwhelming inspiration. We were blessed to meet Brianna in person while in Madison WI over two years ago. Living close to Madison, Brianna and her family would often travel there to meet SMA families who traveled to see SMA specialist Dr. Schroth.  When she learned we would be there for Jadon’s trach surgery, she insisted upon coming to the hospital to meet him.  Brianna was a spitfire and seeing her Facebook posts, her smiling face and constant words of encouragement were a gentle reminder of who we should strive to be.

Brianna’s title changed from Warrior to Angel on January 13^th of this year.  She finished her race against SMA here on earth and flew home to be with her creator.  The task of typing Angel beside her name was too much to hold back the emotions.  As SMA parents we know without a cure, that inevitable day will come, but we try not to think about it.  Let me tell you, it doesn’t work.  Brianna lived on this earth for 15 years and showed us all how to live and love.  She reminded us that all it takes is one to make a difference in the lives of so many.  She reminded us that life lessons are NOT always taught by adults.  She showed us how to Dance in the Rain and she will never be forgotten.

We will continue to run in her honor.

Elementary School Spreads SMA Awareness Across the Country and Around the World

The SMA community is constantly trying to spread awareness for a disease that most have never heard of.  SMA is relatively unknown despite being #1 genetic killer of children under two.  We are always looking for unique and creative ways to help get people informed.  When Mrs. Sheldon, the librarian at Rolling Ridge Elementary School (school Jadon attends) came to us with her Flat Stanley idea, we were overwhelmed with her creativity and enthusiasm as well as the potential “reach” of this project.

We feel Mrs. Sheldon explains it best in this short video:

All 450 students at Rolling Ridge Elementary have read a funny book titled, Flat Stanley, written by Jeff Brown.  The book is about a young boy named Stanley Lambchop.  He is accidentally squished “as flat as a pancake” when a bulletin board falls on him.  Stanley is fine, except for the fact he is very flat.  Stanley discovers some advantages to being flat.  He can slide under doors, go into sidewalk grates, and even fold himself up small enough to fit into an envelope.  When Stanley wanted to visit friends in California, his parents folded him up and placed him in the mail.

All the students made their own Flat Stanley and they have been sent near and far.  Accompanying each Flat Stanley is an SMA warrior or angel.  Over 100 SMA kiddos are represented!

The project is simple, when someone receives a packet we simply ask that they take their Flat Stanley and SMA Warrior/Angel on some adventures. Take them to fun, exciting places, hang out with you at the movies or just have them at Christmas dinner but make sure to take pictures and send the pictures back so we can see where they have been.  We hope to have pictures from all over the world.  Pictures can be emailed to:  flatsrr@olatheschools.org

Here is another blog telling what we want you to know about SMA: SMA Awareness – What We Want You to Know

Many Flat Stanleys and SMA Warriors/Angels have already been out doing some pretty awesome things.  Check out these adventures!

 

Friends

School Friends

What a difference a year can make.

Last year (2012) was all about FAMILY.  Our storm had become nearly the darkest it could be.  Jadon’s episodes had become grave and we decided he would need to be trached if he were to meet his sister who was due to arrive in December.  Jadon’s surgery was scheduled for July 31st and fear would have told us to simply survive the year.  Despite the severity of the storm we did manage to do our fair share of dancing in the rain but nothing like this year.

2013 brought a more stable Jadon and dare I say a calmer storm.  A calmer storm brought with it a whole lot more dancing.  The year has become the year of FRIENDS.  We are incredibly thankful for the people God continues to surround us with.  So many people have taken it upon themselves to simply love our little boy.  Be still our hearts.

With a diagnosis of SMA there are so many challenges.  One of the biggest is having your child be accepted.  Making friends who truly care is often difficult.  So many people (more often adults than kids) can’t get past the obvious differences.

We feel so blessed to have so many great people in our lives.  It is amazing to see so many people standing beside us, lifting up our little boy.  Here is just a tiny glimpse of some of the awesome  2013 “Dance in the Rain” moments with friends.

BUG RUN

BUG RUN

Family in for the BUG RUN

Rolling Ridge Friends who ran the BUG RUN

Summer Baseball

Friends known as the “Bad News Bears”

Sweet Katelyn

Birthday Party

Birthday Party 4 YEARS OLD

Danika played her flute for him.

Yard Day

Church Friends blessing us with yard work

SMA Gathering at the Omaha Zoo

SMA Friends

SMA Awareness Candle Lighting in front of our home

This little light of mine.

Back To School

School Friends

Old Settlers Day Parade – Dancing in the Rain Float

“Dancing in the Rain” float

Hunter, Cody, and The BUG

Friends Dancing in the Rain

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Caroling

Caroling Friends

“A friend is someone who
walks beside you in the sunlight
but dances with you in the rain.”

“Friends fill your life with joy,
your soul with sunshine and your heart with love.”

Hoping 2014 is everyone’s best year so far!

Stupid Elf Made Me Cry

Stupid Elf Made Me Cry

We always try and do as much as we can to find fun things Jadon can do.  We  “Dance in the Rain” of this life storm called SMA as much as possible.  This year was our first year for a Christmas tradition of “Elf on a Shelf.”

For those who are not familiar, the elf arrives and you must give it a name which in turn gives the elf its magic.  The elf’s job is to observe the kids, fly to the North Pole each night and report their behavior to Santa.  The elf comes back from his northern excursion and typically gets into some sort of mischief during the night.  Each morning he will be in a different place within the house and the kids have to wake up and find him.

After going through several names, Jadon decided he wanted to name our elf Eddie and he got so excited every time we set out each morning to find him.

On Christmas Eve all the elves all return to the North Pole with Santa, so the day before Jadon decided we needed to make something special for Eddie to play with on his last night here.  We settled on a hang glider.

Jadon was VERY excited to see him hanging from the ceiling fan the next morning, he kept checking on him throughout the day.  At bed time we hung Eddie and the glider on Jadon’s bed (we were careful not to touch him.  If you touch the elf they lose their magic.)

Christmas day I excitedly pointed out to Jadon that Eddie had gone but he left a note.  Eddie said that Jadon was such a good boy but Jadon was visibly upset. I could tell he wanted to see Eddie not a note from him.

I began to explain that Eddie was in a much better place.  The North Pole is great for Eddie because he can fly around all day (instead of just at night), play with his friends and just simply hang out with Santa.  I told Jadon he would see him again next year which of course to a 4 year old is like a lifetime.

Somewhere in the midst of my little speech I realized what I was saying to my terminally ill child.  I realized I was using the words I dread to hear.  The words that will likely be used to comfort our family when THAT dreaded day arrives.  I believe that when Jadon is called home by the Almighty he will truly be in a better place, he will be free from SMA, he will get to celebrate each day with God, and one day we will all be reunited in heaven.

I quickly realized that while I believe these words to be true in relation to real life (not a little elf and Santa) they will likely do little to comfort the pain of loss when that horrible day comes.

My mind quickly shifted to all the families who have already lost their angels.  Those families waking up on Christmas morning wishing they had just one more Christmas with their precious child.  With tears in my eyes and Jadon looking at me like I was insane, we said a prayer for those families.  We prayed for their comfort and understanding.  We prayed that they would find laughter in the day while still remembering and missing their angels.

Jadon seemed to get it.  He seriously seemed to understand as I wiped the tears away and proceeded to get him out of bed and ready for his treatments.  I talked to him about how we would have the best Christmas day ever, how we would do so to honor all those angels.  We have no control over tomorrow but we can choose to enjoy each day.

Jadon had the best day.  His oxygen saturation was 100% the entire day, his eyes sparkled, and was “singing” all day.  I think he was singing for the angels.

90% of kids with SMA Type 1 don’t live to celebrate their 2^nd birthday on earth.  Jadon was exactly 54 months old (4 1/2 years) on Christmas day.  Every day he beats the odds those odds worsen.  We don’t care what the statistics say because Jadon is with us now and WE WILL DANCE.

Eddie messing with the Toy Story crew

Looks like they caught him the next night.

Making friends…all is good

Never pick a snowball fight with a snowman.

Hoping everyone had an incredible Christmas.