Today was the walk n Roll for FSMA...and it was amazing. Something about seeing everyone there to support curing SMA takes my breath away and makes my eyes kinda cloudy. It was a great day!!
My family! Running for the Bug
Jack didn't just do 2 laps around the lake...he did 3!
FSMA leader
The amazing a capella group
Attempting to play games;)
We didnt have a flag so this kind gentleman "volunteered" to be the flag!
Getting ready for the group picture
Sweet girl from New Mexico came just for the run with her Daddy
Starting off!
Kids helping kids:)
Me and my fantastic brother at the end of the race
Jake came in 17th place, Daddy came in 19th place, and i came in 23rd place
I like this picture cuz he claims he wasnt in pain...righht;) haha love you dad
Amazing leaders
Hanging at the end
Great day shared with great people.
Thank you to all of you who made this day possible
....well actually a lot of someones(:
School starts tomorrow for me and so i wanted to write this now because I know i won"t have time to on Friday.
August 16th...Skylar Marie Jones lost her battle to SMA. It was the first SMA angle that i experienced. I knew that we all had a short time here on this earth and i also knew that the SMA fighters had a shorter time, but it never really clicked to me until Skylar's death that we are fighting a battle with a time limit for each of these beautiful kids...a time that we don't know how much more we have to help them fight.
Lots of people say when an SMA baby dies that they lost there battle(i do too...sometimes) but my perspective has changed since 2011..Skylar lost her battle here but she also won her battle. She is cured now!
When Skylar died it hit me really hard...i was mad at God for taking her away. Okay I was furious. Im not proud of it at all. Because I am just a little girl who He made and he will take away. He made Skylar for a purpose on this earth and she fulfilled it.
I still ache because i felt so so so close to her. I loved her and I still do very much. She taught me so much, when she was here with us and when she went home to be with our Father. There are days and moments when i feel like i can feel her smiling down on me...through a little sprinkle of rain or the glorious moment of watching a beautiful butterfly fly by you. Through all these little things I remember the purpose that God has for each and everyone of us. And I think of those who completed their purpose and my heart has peace...
Skylar Marie...
Keep flying high sweet angle. You will always live on in my heart.
Love you
August is here, which means back to school shopping and getting everything ready for us kids as we head off to school for a new year. But, August is also something bigger than getting new pens and pencils...its SMA awareness month.
Getting the word out about anything is difficult and taxing,but there are so many parents out there who are giving it everything they have to get the word out about their sweet child and all the others who are struggling with it too. They have the strength to keep fighting for their baby as they fight to keep going too. They might get discouraged but they take one look at their child and its all worth it.
Here are some of those devoted parents...
They will never give up and they will always keep fighting because they know that it is so worth it every tear they cry,every time they sweat. no matter how many times they fall they will always get back up because they love and love and love...spread the word, get it out there,save lives...
Jadon Thomas,
You are four and so full of life...you're the strongest boy I know. You inspire me and remind me to live each day to its fullest and to not take anything for granted. There was a time when I didn't have any hope and then I got to see you for the second time. And I left your race filled with love and I felt needed. Bug, you gave me hope...you have touched my life in so many ways.
Thank you for letting me play my songs for you, for letting me hold your hand, for singing to me, thank you Jadon for being my hero...my inspiration to keep going. You taught me how to truly love...to truly live. I love you deeper than the ocean...higher than the sky. To the moon and back again, to infinity and beyond...forever and ever.
Have the best year ever as a big four year old!!!
Hope to see you soon:)
Love you bug,
Danika
I havent been on in a really long time, Sorry.
hanging with Bug day before race
after the race with our crew(except for the ladybug)
Burks crossing the finish line at their race
Gorgeous Gracyn Jaye
Super Bug Capes(:
Us three kids spent a week at Grandma and Grandpas house. Jake made this in their front lawn on Jadon's Birthday.(they dont know...shhhh)
Day before his bday party. Me and Bugger(:
At his party(: Jake Ayanna and Me.
Kristin and Gracyn <3
Jadon Kristin and me
Gracie and me, meeting Obi and the clones
Jadons awesome cake
Pretty girl
Burks family...thank you for everything. When i go through my storms, i struggle alot. Like everyone does, but you guys have always given me hope and have helped me get through all my down times. You all encourage me with your strong spirits and your endurance to never give up even when you cant see through the fog. I love you guys so much thank you for helping me find my hope.
"Through all the storms in our life there will always come a rainbow."
-Pastor Gerdt
My bible teacher is teaching my class about Genisis and we just got through Noah's flood. We were talking about the rainbow when he said the quote above and it stuck out to me. It was so perfect and it made me think. There are a lot of storms in our life but it takes strength and faith to fight through them and stay strong and continue to have hope. I continue to believe in His faithfulness and to have hope that He will someday cure SMA. I have days when I feel really down and just plain out depressed but there always seems to be a little light and a little hope. These days aren't fun but they always pass and there is always a rainbow. Sometimes it's a faint one that you have to look really hard for but none the less its there showing me that God is still walking right beside me, holding my hand and helping me along.
It has been a really long time and a lot has happened since the last time i posted something. My siblings and friend Cheyene ran in the Got Hope?SMA Walk n Roll and it was AMAZING(: we had so much fun and I enjoyed being around people who understand what it's like to be effected by SMA. We got Jadon bugs on our faces and we got balloons made to wear like butterflies. I loved being surrounded by Families Of SMA and seeing all the kids playing together. It was a great experience and I can't wait to do it again next year.
For fun my family started climbing mountains together and we made it to the top of most of the ones we climbed. we climbed the twin sisters for Gwendolyn Strong's birthday and we did make it to the top.I took off my gsf bracelet and took this pic at the top...
On December 14 Gracyn Jaye was born into this world and Jadon is now a big brother. She is beautiful and so precious. Words fall short of describing the joy that I had when she was born. She is a gift from God and an amazing blessing. When Jadon was diagnosed with SMA I didn't understand what all SMA would do. My parents told me that Tony and Kristin probably would not have any more kids but than we got the news that they were going to have another baby. I prayed for a girl and yupp that's what they got(: I am so happy for their family and I can't wait to watch her grow up into a beautiful girl. Welcome into the world Gracyn, stay strong, live lovingly, dream endlessly,wish on stars,and Never Ever Give Up.
Christmas came and with it love and dreams. My sister and I got Beb-e-ssential owl hats and they are really cool. We love them and love having the same hats that lots of the SMA kids have. This Christmas I thought a lot about what families who lost a child to SMA must feel like spending Christmas without their baby with them. I want you guys to read this blog post by Skylar's mom it really made me think about not getting wrapped up in all the Christmas stuff but focusing number one on God and what he did for us and two on being so thankful for life. www.skylarmariejones.com
A family also needs prayers right now, Cooper has SMA and his daddy was in a car accident and died. I can't imagine what his mom is going through right now. How can you explain this? Our lives here are so short and none of us are promised another day. But it was so sudden and there was nothing they could do to save him. Please pray for them as they go through this horrible time. And before you do anything else take some time to tell those you love that you love them and make them feel loved because you never know what could happen in the next second. Leave nothing unfinished, make your dreams reality and make sure that if your life was to flash before your eyes that you wouldn't have any regrets.
"Leave nothing for tomorrow that can be done today"
-Abraham Lincoln
2013 is here and I hope that this is the year that we finally find a cure for SMA. I can't wait to see what all this year holds. I know that there will be trials and storms that will come and that we will dance in the rain and find a way to push on in life and that after each storm there will be a rainbow that will shine down on us and show us God's unending love.
-Danika
We pray for a cure and we believe that God will give us one. Until God gives us a cure we wait and like Callie we pray. If there are days when you feel like you can't do anything to help out SMA and those effected just send up a prayer. We're all in this together and we wouldn't have anything without the grace of God. Keep Praying it just takes time
