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).
We have been following Katie Horner’s Mission over the past several months ( Woman on a Mission) and it is all about to come to a conclusion. It has been an emotional journey to see her work so hard and reach her goals while constantly thinking of others. Her objectives are just two days from being completed.
COMPLETE – Raise enough money for all the students at Rolling Ridge to run The BUG RUN.
COMPLETE – Run The Boston Marathon.
REMAINING – RunThe BUG RUN and show ALL 485 students at Rolling Ridge what it means to run for a cause…”RUN to end SMA.”
This is an update from Katie today:
“2 more sleeps” as my son Hunter, who is the same age as Jadon and share the birthday month of June together, would say until the 4th Annual Jadon’s Hope Bug Run!
Today, like many days, was another day at Rolling Ridge where excitement filled the air! Our students received their race shirts and bibs. On top of that excitement, we decided to have an all school picture. So, with about 480 kids plus numerous staff members, we all went out to the playground first thing this morning to smile in the sun as a community! A community that shows compassion, spreads awareness of SMA, stands together, works together towards many common goals, and supports one another! We are truly blessed and could not have done that without the support from this campaign and the support of the entire staff at Rolling Ridge pulling together to make this happen.
I leave you with some quotes that were heard from our students at various times today. Some of which I heard and others that were passed on to me.
“Hold up, we get our OWN number?!?!”
“My number is 246 or maybe it was 146, I don’t know, but either way I have a number!”
“You have the same shirt on that I do…(long pause), wait we all have the same shirt!”
“Mrs. Horner, I am running for Charlie, who are you running for? Are you running for a Warrior or an Angel? I hope they find a cure so there are no more angels.”
Together, WE RUN TO END SMA!
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.
Two years ago I built wooden ramps for our sidewalk which has a single step at the bottom and a single step at the top. With only one step to conquer at a time one would think we could use the “Stroller Wheelie Move”. You know the move, it’s where you pop a wheelie with the stroller, place the front wheels on the step, lift the back and push the stroller forward onto the step. Easy cheesy but not very pleasy when the “stroller” weighs over 90lbs fully loaded with equipment. Once you throw in a 30+ pound super hero the wheelies are pretty much out of the question.
Once I finished the ramps it occurred to me that what I had built was very temporary. I used plywood which would not withstand the weather for more than a couple of years and these ramps would not support a power chair if we were ever to go down that path. (A power chair can weigh closer to 300 pounds or more). It occurred to me that my Hope in Jadon’s future was not even as strong as these weak ramps I had just built.
This is the part of SMA we hate the most, the temporariness. We want to plan for the future, we want to expect it, but the overwhelming statistics tell us not to even think about it. We Hope for Jadon’s future, but Hope is different than having Faith. We have Faith that Jadon’s life is in God’s hands and that God’s plan is better than what we would plan. We Hope this plan we are living includes Jadon sticking around here for a lot longer.
The ramps needed to be revised before the upcoming winter and we decided to explore the option of doing concrete. We didn’t think we could afford it but wanted to see.
The bids came in lower than I thought they might, but seemed it would likely still be too much. In a conversation with our physical therapist Jeannine she asked if there was anything we needed and Kristin jokingly said a new sidewalk. She said she would check into it and maybe someone would be willing to help with or even donate the concrete.
Jeannine spoke with several people before she spoke to Mike at Kincaid Ready Mix. She told Mike our story and asked for some concrete, he said “Sure”. Wow, just like that he said he was willing to donate concrete to make Jadon’s life a little easier. He also said he would look at our contractor list and make a recommendation. Before we could get that information to him he called back and said he had a contractor.
I met with Doug from F. Winters and Sons, a respected concrete contractor right here in Olathe and he said he would get back to us. I asked Jeannine about a bid and she informed me he was donating the labor. WOW!!
I hadn’t heard back from Doug but last Tuesday morning he knocked on the door at 6:45am. We were getting Jadon ready for school but Doug told me they were going to do our walk that morning and asked if that would work. YES, yes it would. They were completely done by 11:00 and it looked amazing.
We went to school on Wednesday to make up for the day we missed and the ride down the walk was as smooth as a basketball court. If it were not for Jadon we would not have gotten to witness this complete unselfishness. We may not have been exposed to this kind of unconditional kindness. While Kristin and I hate SMA we are humbled by WHAT and WHO God has shown us through this disease and through Jadon. These two men and these companies will never know exactly how much they have done for us and we can not thank them enough. A big thank you to miss Jeannine as well.
We don’t know if we will get a power chair because of some major obstacles (cost of the chair, we would need a different vehicle, and Jadon’s ability to drive the chair.) However, one of the obstacles has been removed, and our Hope has become stronger. We can’t yet say we have Faith in a long future but we certainly have Hope. Not wooden Hope,