Prayers for Jadon

Jadon is having tracheostomy surgery on July 31 and he needs all the prayers he can get. 

Please pray for a good surgery and for Tony and Kristin to have strength as he goes to have this done.

I love you Jadon and we're all praying for you.

The Bug is 3!

Jadon is three... a day doctors told us would never happen. And yet here we are celebrating a boy who has impacted so many lives. He is amazing,strong.courageous,and adorable.The Burks spent Jadon's big day in Minnesota with the SMA conference. He is getting so super big it feels like yesterday that i got to see him at his house when he was only one month old. He was sitting in a little boncey seat and i was sitting on the floor in front of him he kept spitting his pacifer out at me. Then i would get it and he would spit it back out. He touched my life and i love this little boy  big boy so much!
 
So...Jadon Thomas Burks.... Happy Birthday!!!!


The birthday boy, three tattoes for three years
 
Cartoon  Jadon...

Song and Surprise!!!

Praise you in this storm-Casting Crowns

First of all this song really helped me after Amanda died. It was the night that I found out I was crying and thinking about how horrible death is. Some nights I listen to K-love. I love their songs and that night I turned it on and as I prayed for comfort and for Amanda's parents this song came on I hadn't heard it in a while and didn't recognize the song at first. I consintrated on the words and found them comforting when it got to the praise you in this storm part and I lost it. There is a qoute that my great Aunt found and I fell in love with it (my cousin Jadon's blog has this qoute on there too) here it is:
                   " Life's not about waiting for a storm to pass it's about learning to dance in the rain." 
     
The song reminded me of this quote and that reminded me of Jadon and all the other kids. They aren't able to move but yet they are dancing in the rain. They don't let SMA get them down they still have fun and encourage so many peolpe. They are truley amazing and I love all of them very much.

Now for the surprise... Jadon is going to be a big brother! The baby is SMA free and should be coming into our world in December. They still don't know if it's a girl or a boy. I am so excited I can hardly stand it. Jadon is going to be the best big brother ever.  :)
Congratulations Burks family!

Happy Birthday Jack

    

Jack was born on this day last year and he was diagnosed with SMA type 1. In December SMA took him home. He would be one today. He is so super-duper cute and his eyes are stunningly beautiful. In a letter to him after he died his Mommy said this: "You are still here in our hearts, and go with us wherever,  if love could have saved you, you would ave lived forever." I love this quote; it is so true. SMA is evil and I hope and pray that someday we will be able to lift our eyes up to heaven and say "Thank you Lord... thank you." But until this day comes we remember the ones we have lost and think about where they are and Who they are with. They are happy and not in any pain. They can breath, walk, run, and laugh really loud. :) Most importantly they are SMA-free and they are with their Creator . So for now we thank God for the time we had with Jack and Amanda and Skylar and all the other little Angels .

God bless and Happy birthday Jack!  I love you!

Birthday Wish...

Tomorrow is my birthday, it has been a rushed week.I found out about Amanda on Wednesday,and I got out of school on Thursday and I am now thinking about summer trips, swimming, and my birthday. Sweet 13! This birthday is exciting for me it's my first birthday with Ayanna(for those of you who don't know my family we adopted a 12 year old girl this year)and It is my first birthday without two little girls. two little girls who I grew very close to over the past year. This time last year I didn't know a lot about SMA it was when i heard about GSF that everything people told me about Jadon became reality. I didn't know that it was terminal and that it affected their breathing or that they couldn't swallow and eat solid food but this is besides the point. The past year I went through some amazing and some depressing changes. This past year I lost Skylar my favorite 21 month old girl. after Skylar died I was mad at God and when I talked about her I would try to make it sound like I was okay with every thing but I wasn't I was very mad. all this changed a little while ago at the beginning of this month on the 3rd I accepted Jesus Christ as my personal savior. I now understand a lot more about why God took Skylar(and Amanda)home to be with him.... He had a purpose for her and He wanted her to go right then. And now she is carefree and so so so so happy. and I'm happy because she is happy. I am so thankful to God for giving me this new perspective. I'm excited for tommorw and for a brand new year when I will grow closer to him and will be watching all the kids I follow grow up to the age He wants them to. So tomorrow as I blow out the candels on my cake there will be only one wish in my mind and on my heart...that God will bring us a cure for SMA and that He will allow Jadon,Gwendolyn,Nora,Lucy and all the other kids to live until He brings us a cure. Thanks for putting up with my weird out of order paragraph and I hope you have a great day tomorrow. God bless!

Amanda Cordoze

SMA took Amanda home on Mother’s Day. Words fall short of describing the pain that comes with the death of a baby... there's something so unfair about a person dying I even hate the idea. I’m at a loss of words right now. Losing someone you love is the hardest thing to go through in life you have to have the will to carry on without them. And when you have an empty spot in your heart that used to be full with their love it is really hard to carry on. But through the power of God you will be able to do all things (Philippians 4:15). Last night I lay in my bed and remembered all the posts I read about Amanda... There was a time when they baked cookies and Amanda threw a fit and didn't want to help she made me smile and I will miss her tremendously. I can picture her in my head running and laughing loud enough for everyone else to hear. I can imagine her and Skylar running together and talking about stuff. I can see them both smiling and having a tea party and I can see them sitting at the Feet of their creator and listening to Him talk and tell them how much he loves them... And even though my heart aches for her to come back to us I am happy that she is happy and that she is in peace and that she is free from SMA. Rest in Peace Amanda, I will never forget you.

Praises...

Addy is back and is feeling better. She had fun at the hospital though... Cinderella came and saw her when she was there. Amazing, the Lord works in mysteries ways. Also Ayanna and I ran a 5K on Saturay last week.  It was fun and we laughed at each other practically the whole time we ran. We are some of the girliest girls and so running across that finish line was a huge accomplishment for both of us. We have other 5Ks coming up too. We are trying to get in shape for the half marathon. Right now I feel really good about running it. Cheyenne, my friend who encourages me and makes me sooooooo happy, is also going to run a few of the races with us. We have the shirts and everything. I will post pictures of us later. God bless, Danika