“Gitchee Gitchee Goo means I love you!” The radio in the other room blasts the soundtrack to Phineas and Ferb (One of Bug’s favorite shows) while my beautiful wife bathes our amazing son who we call “The BUG”. She sings along as she moves Jadon’s arms to the music. I stand in the doorway with a shark shaped towel draped from my head waiting to catch a dripping wet boy when the fun time, I mean bath time, has ended. This is definitely one of “those” moments.
Only now, standing in the doorway of the bathroom, does the magnitude of the events from Tuesday morning really hit me. My eyes swell as I reflect. Tuesday morning was not fun. Had it gone only slightly different this bath time would not have been possible.
Jadon had his biggest “episode” to date.
Not going into the details of this nightmare I will just say that I was very scared our rollercoaster had derailed. While the machines were productive and my actions were helpful I believe LOVE is what kept him here, and it’s what has kept him here all this time. While I am not a trained medical professional I believe that the “pros” would have given up on our little warrior, which is something I refused to do.
After an insanely stressful morning, I changed my sweaty shirt (the shorts were surprisingly ok) and decided to take Jadon outside to enjoy the day. While every ounce of my being wanted to simply sit comfortably inside, close to the machines, I was drawn to take him out. He loved it. The rest of the day was pretty good, Wednesday was even better, and today was nothing short of amazing.
Today Jadon was so happy and talkative that I didn’t want to lay him down for his nap. I didn’t want that play time to end -ever.
Such is the “Rollercoaster of SMA”.
Recently we have been planning for Jadon to attend pre-school next fall. We have also been planning some summer trips. We are excited to be making plans for the future but are constantly reminded of the beast known as SMA residing in our lives. We are constantly “getting past” the bad and simply enjoying every second of the good. It is obvious that the destination of this ride is solely in the hands of God.
Our rollercoaster dips pretty low sometimes but the view from the height of this ride is so incredibly worth it.
Jadon's Hope Blog 