Life is full of proverbial storms and our storm happens to be Spinal Muscular Atrophy (SMA). In comparison, SMA makes the most difficult of our previous life storms look like a cool breeze on hot day. SMA makes EVERYTHING more difficult. The simplest, fun adventure can become the most stressful day as we wonder if that adventure will cost our son his life. We have had many close calls but continue to press on. With every close call we have gotten more experienced, we have gotten more comfortable, and we have learned new “dance moves”.
Shortly after Jadon’s diagnosis my aunt gave us an article that ended with this saying;
“Life is not about waiting for the storms to pass,
It is about learning to dance in the rain.”
We have latched on to this and insist that we will dance in the rain of this storm. It’s not always easy and it’s not always fun, but we are determined to give Jadon as many life experiences as we can.
It warms my heart to see pictures of families getting out and doing things despite the challenges that “getting out” presents. August is SMA Awareness Month and we will be doing many online things to spread awareness and show the world the incredible heroes that live with this disease. On our Facebook page Jadon’s Hope Foundation we will be highlighting kids and adults with SMA who are “dancing in the rain”. These families are nothing short of amazing. We will post pictures not only to honor them, but also to inspire us. Please check the page every day in August and share the pics of these amazing people.
Jadon is scheduled to have Tracheostomy surgery on July 31st in Madison Wisconsin. The forecast promises to be very stormy and dancing will be difficult but we will find a way. Please keep us in your prayers as we take this difficult step in hopes of making his respiratory more stable. With his respiratory more stable we are certain it will open us up to a larger dance floor.