August 25th 2009, is our D-DAY. The doctors didn’t tell us what our life with SMA would look like today, 3 years later. What they told us was that 3 years from that day when we spoke of Jadon’s life, we would be speaking of a life that WAS, not a life that can be. They told us we most likely had less than a year with him and definitely no more than 2.
I don’t blame the doctors for the weather they were forecasting. The statistics they referred to are unfortunately very true:
-SMA is the number one killer of children under 2
-50% of SMA type1 kids will not see their 1st birthday
-90% of SMA type 1 kids will not see their 2nd birthday
It’s not so much about WHAT they did or didn’t know as it is WHO they didn’t know.
They didn’t know all the SMA families we now know. We have focused our Facebook page ( Jadon’s Hope Foundation) this month on these people choosing to make life the most it can be despite the storm of SMA in their lives. “Life is not about waiting for the Storms to pass, it is about learning to Dance In the Rain.” These kids and these families have inspired us to new heights
We know it’s by God’s grace that we are still allowed to look upon Jadon’s face and we feel incredibly blessed to do so. At the same time we mourn for those short lives that make these statistics true. Life is way too short and while this journey is rough I am glad our course has been altered. I am confident that we will not be returning to our formerly scheduled path. I am confident that we have been forever changed. For that I am thankful, but SMA still sucks. We have learned a new appreciation for life. I would rather have less and appreciate it, than have it all and still be looking for more.
SMA is one nasty storm but we are determined to dance in it’s rain. The funny thing is, before D-DAY our life had storms but we usually failed to dance. Now we make the time for life, we appreciate the time, and we enjoy every single second we can. Every life has storms and none of us are guaranteed tomorrow.
What will you do today to “Dance in the Rain”?
This video is set to the song “What Faith Can Do” by Kutless. This became “BUG’s song” after a friend did a slideshow for us shortly after his G-tube surgery. Now, everything stops when it comes on the radio and we sing with BUG. The video shows his last two “unexpected” birthdays and his most recent surgery. With a tracheostomy there is always a chance the patient will lose the ability to make sound. We prayed for sound, any sound…it’s amazing “What Faith Can Do”.
Thsi is way cool
Thanks for sharing this life lesson
I am speechless. Thank you for sharing Bug’s life with us. You have done an amazing job and are so strong…each of you! I am so challenged by his life and I pray that I will dance in the rain as well as Bug someday.
Thank you for sharing. There is a plaque above my kitchen door that says “There is always, always, always something to be thankful for.” The sound you were praying for, has just once again reminded me to always, always look up, and always, always, always be thankful! Hugs and blessings to you all! xoxo
This truely brought tears to my eyes.What strong parents you are for your little boy.From now on when I think life is hard I will think of “bug”.Ive been reading your facebook updates for sometime and just wanted to say something.Bless you!
Amazing love! What a joy to witness His amazing love lived out by you!