The 6th Annual BUG RUN

6th Annual BUG RUN held April 7, 2018.

Each and every year we are blown away by the amount of support we have for the BUG RUN.  It truly warms our hearts to see people jumping on board to support our SMA community and our little hero, Jadon “The BUG” Burks.  However, this year’s race was nearly the race that wasn’t.  With a winter storm in the forecast (IT”S SPRING!!! Buuuuuuut) the city needed to make a decision on our race.

Within the window of uncertainty we couldn’t help but think of all the hard work that went into a day that potentially wouldn’t happen.  We couldn’t help but think of those who were planning to run their first race, and those who would “run for” an individual with SMA.  We couldn’t help but think of all the many volunteers that set that day aside to help spread SMA awareness.  The hardest part was considering the fact that our committee had worked ALL YEAR for a race that might not happen.  Planning for the BUG RUN starts nearly a year in advance.  (We have already had a meeting for next year’s race.)

Our committee is completely incredible.  Our “Amazing Race Director” (That’s now her official title) Amy Vrban keeps us all organized and everyone does their part with such dedication and enthusiasm.  We are truly humbled.

We want to give a big THANK YOU to our incredible committee

Amy V.
Heather A.
Michele L.
Cathy L.
Melissa C.
Jennifer S.
Holly H.
Melissa H.
Joanne B
Kristen W.
Tiffany S
John E.
It was futile to think we could control the weather, but we could pray, and that’s what we did.  The forecast began to change and the 90% chance of possibly 3” of snow became a 5% chance of a trace of snow.

THE RACE WAS ON!

IT WAS COLD!

IT WAS REALLY REALLY COLD!

Did we mention that it was COLD?

BUT IT WAS DRY.

The week leading up to the race was possibly more stressful than other years, but possibly it was even more rewarding.  We were relieved to simply have the event.

Despite the cold, the racers showed up to race.

DJ Ty was there to spin some tunes and help us keep things moving.

The kids showed up to sing the national anthem.

The city was there to keep us safe and we had ourselves a BUG RUN.

We hope the 6^th annual BUG RUN will be the coldest we ever have and we hope it never rains but the only forecast we can be sure of is this:  If there is a BUG RUN, there is good in the world.

THANK YOU ALL SO MUCH.

SEE YOU NEXT YEAR AT THE 7^TH ANNUAL BUG RUN!

 

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