Throwbacks play a huge part in my life, and i live by the sudden shock of a smell or a feeling in my stomach that takes me back in time. I have always been comforted by smell and by sensory touches. And now a smell or a sound, something out of the ordinary, can come to me and trigger that memory and i relive that time in my life. Sometimes it is a good thing and other times it opens up a scar and i bleed again. All my memories while i am present with Jadon are amazing and little things that are nothing to everyone else around me, take me back to olathe and im with him again. I remember the day we found out about Jadon's diagnosis. I can see the tears on my moms face and her trying her best to explain to me and Jake about what was going to take place as Jadon grew. I think we were all really confused and so that added to the abundance of tears that flowed from my families eyes that day and in the days to come. with lots of my memories i can see what happened as if i left my body and was standing somewhere close by watching myself act. I know it isn't what really happened but it's how i see things. I was on the top bunk of my bed pulling blankets around the mattress then tucking them into the rungs that held the bed together. i had already heard the news about J's diagnoses but it took me a while to process what it actually meant. I talked to myself a LOT when i was little, and just between you and me i still do. I was very big on make believe things and me and my neighbor would often be sitting around a computer finding pictures of houses that were for sale in whatever town we thought was amazing for that week. We went on airplane rides and rode horses. We cut up magazines, finding clothes that we liked for us and our pretend siblings. when either of us would return from a trip we would tell the other all abput the states we saw and about what new names we heard or what swimming pools we played in. By the time i was 7 i was a world traveler. After i returned from visiting Jodon for the first time, when he was only a few months old (before d-day) i was filled with love for this new baby that i had seen i told her all about him and his room and how fragile babies are.( as a young kid that really stuck out to me was how careful and slow everyone was around the baby) At this point in our games we weren't siblings anymore but we were actual parents with little kids and jobs and cars. We, being girls, hadn't ever had a "brother" in these games let alone a son. But I came back from this trip and i had changed. Now i thought baby boys were the best thing ever and all of my sons had one name... Jadon Thomas. My grandma would even talk about names that Tony and Kristin had considered before choosing his name. Timber was the main one that i remember. I used that a lot too. I even named a chicken that .... yeah i was weird. After Jadon's d-day though thimgs changed, this time differently. I didn't like to pretend as much as before and using his name seemed wrong. I was worried for him, but in a way that a forth grader would worry. My neighbor and I played a few more times, but mostly we drifted apart. We changed and i think that it was for the best now, but at the time i was confused and sad that my fantasy life was dying before me. You know how people say that someday you'll look back one day and see how everything played out, perfectly for you? I'm starting to see some of those in my life that i was worried i wouldn't ever see. I quit playing those games because i was scared that something bad would happen to whoever i used in my games. I can see today though that it showed me the real world in a different light. It's not all fancy houses and lots of rooms with hired help and expensive clothes, It showed me that change can be good and to accept it with open arms because the more we struggle the more we sink. I will remember my games and that life with it's smells of summer and lilacs. Ill remember buying baby clothes at the habitat store, and it will stay as one of the happiest times in my life because i was living my dream, and finding out what i wanted to do with my life.
Last year was a really rough time in my life and so getting to go out and visit Jadon for the first time since 5th grade was amazing. I got to see my hero and feel is hand in my own. It was a magical experience for me to visit him after only seeing him grow through pictures.After doing the first bug run we headed back out to see him in June for his birthday. It was the best thing that happened that summer and i can't wait to do it again this summer :D
We just got back from the 2nd Annual Jadon's Hope Bug Run and my words fall short of describing the overpowering joy that fills me whenever i'm with the burks family. When i stand next to him i feel like i can do anything. He radiates happiness and strength and makes me feel alive. Its amazing. I had my best time yet for a 5K with 35 minutes it's not amazing but it's the best that i'm able to do. ( At this time... next year i want to say this again only with a lower time) Kristin is such a strong willed lady and she inspires me with her heart and gentle attitude. Seeing her talk in front of everyone was encouraging and something that pushed me to speak out. Before the race started i lost it, the tears came and wouldn't leave. It's so incredible to see all those people lining up for Jadon. They were their supporting him and the kids with SMA, it touched me in a way that i hadn't expected and so i let the tears take over. It was about 2 minutes till the count down when my dad told me to go give Kristin a hug. I was nervous at first because i didn't want to get in the way and i didn't want to miss the start. Kristin, you give the best hugs, The most encouraging, tight hugs and it gave me the will to actually run my race. "Go get 'em" that's all i heard the entire time. Not my music- it was simply a buzz, not the people holding sings, just your words. "Go get 'em" It pushed me. When i fell and wanted to quit there was your voice, clear in my head. "go get 'em" NEVER GIVE UP. And i finished it, the end came closer and i could hear the cheers ahead. This is SMA and this is how we help them dance. Best. Day. Ever.
|Awesome Big sign :)|
|This beautiful girl is getting SO big|
|Running for the finish line :D Go Bug !!|
|Jadon... you will always be my superman. "It's not about the powers. Not the cape. It's about justice.|
For truth.As long as people like you are out there, i'll be there. Always."