The 7th Annual BUG RUN was held on March 30th, 2019. The temperature at race time was 34 degrees and it was snowing (But it was better than rain).
SMA Awareness
All posts tagged SMA Awareness
Jadon is 6 years old…plus a few weeks.
Jadon turned six on the 25th 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 1st 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
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 13th 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.
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!
Jadon's Hope Blog 