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
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...
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!
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 .
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!
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.
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
Addy is sick. She and her family went on a trip with Make-A-Wish and as their last post said her parents took her to a hospital in Orlando,FL. They intubated her and they flew her out on the 30th and they want to take her to Wisconsin to see her specialist. Please pray for her, she is really sick and needs all the support she can get. Pray for the doctors to have wisdom in everything they do to Addy. Thanks.
Ayanna, Jake and I have been training (stopping every other house to complain about a side stich or being thirsty) for the GSF half marathon in November. It is hard really hard but we are getting to the point that i think we can do this. When we run we get our GSF gear on and then we run like the wind (a slow tired wind). the first day that we ran we turned the corner to get onto the next street and we met up with another jogger. I turned and yelled to Jake to hurry up I know real encouraging, he caught up and we started off again. The lady smiled at us and told us that we were doing great. I was so tired and I think Ayanna said Thanks. She smiled at us again and said "Never Give Up" magic words!
When I run I get worn out and its hard to think . I used to get frustrated with my siblings and yell at them (more than I did with Jake), but now when I run all I see is all the kids with SMA like their on a slide show in my head. I ask myself over and over again "who am i runnin for?" "what am i runnin for?" It pumps me up and get a sudden burst of energy. I am so excited to run with all the other GSF runners why can't time go faster i wish it was November!
Another way we get our blood going is to watch the never give up movie i've posted it before but i will post it again...
Please continue to pray for all the kids with this disease, for everyone running and for a cure.
With love,
Danika
Angle Milania is a beautiful little girl. I never read her blog or watched her movies until now and its to late for the full impact of her personality to make an imprint on my life. This doesn't mean that my heart doesn't hurt for her family because it does. This doesn't mean that i didn't cry when i came to the part that told my she had earned her angle wings because i did. This is a different feeling and i can't explain it. This a reminder to me that there are thousands of angle families out there. Who when they walk into their SMA child's room they break down and cry for them to return but they can't. They are in the arms of our heavenly father who loves them just as much as their earthly families did and do love them. I don't know if this made sense to anyone else but me. It just kinda came out of my heart hopefully it made sense to you like it made sense to me.
Love,
Danika
Cheyenne is an amazing girl at my school. She has been there for me all the times I cried,laughed,or just needed someone to listen to me. Everyone who knows her knows the joy that she spreads. On August 17th she was there the most for me. This was one day after Skylar died. Today I gave her three papers full of kids with SMA she understands the pain that this brings on those who experience it. She laughs with me when I copy Lucy and say"but why?" She is a huge blessing to me. So Cheyenne, thanks for being the one to hug me when I cry. Smile at me when I talk to the class about Skylar. And chase me around the locker room with hairspray or scream when your legs don't tan right. Thank you for being there for me.
I love you cuddle and fishy buddie.
Love,
Danika
Happy Birthday Nora! What a big girl you are, It feels like just yesterday that I read the post that you had turned two! I Love you red headed wonder! May All Your Birthday Wishes Come True!
God Bless you in this coming year!
Love,
Danika
Nora and Lucy are both sick. :( Nora has a problem with her feeding tube and that makes her throw up in the night. And Lucy has high heart rate, low oxygen, coughing, and her left L was sounding diminished. So there is a huge reason for prayers. Nora is going to turn 3 next week! Please pray that she makes it to that big day. Lots of Love, Danika http://www.chadncherissefamily.blogspot.com/ http://www.goodentree.com/
Ayanna, Jake and I have been training (stopping every other house to complain about a side stich or being thirsty) for the GSF half marathon in November. It is hard really hard but we are getting to the point that i think we can do this. When we run we get our GSF gear on and then we run like the wind (a slow tired wind). the first day that we ran we turned the corner to get onto the next street and we met up with another jogger. I turned and yelled to Jake to hurry up I know real encouraging, he caught up and we started off again. The lady smiled at us and told us that we were doing great. I was so tired and I think Ayanna said Thanks. She smiled at us again and said "Never Give Up" magic words!
