But, the crazy thing is we never have too long of a break. We just passed the year mark from Madilyn's last spinal surgery. Things are changing. So I am back to marking that calendar. We already had a new Urodynamics study. We will head back to Children's for ultrasounds. We have to consult with Orthopedics and then back to clinic to put all those pieces together. Sometimes its a vicious cycle. It is so easy to get caught up in it and let it rule your every aspect of your life. It can ever paralyze you into thinking that there is nothing else to do.
Measuring time.... Madilyn knows the drill and understands what all these appointments mean for her.
But, today, we broke the cycle of not doing and did something MAJOR! Dont' get me wrong....we enjoy life but sometimes doing big things is just too much work. We loaded up and head to downtown Atlanta and participated in ESPN's College Game Day. It took some planning and we had to carry our emergency bag complete with extra clothes, undies, wipes and everything else we would need. We had water to keep her hydrated. We had to watch what she ate because she gets sick very easy. After we made it through that......Madilyn was given the opportunity to go to the Georgia Tech game with her Dad. I kissed them at the gate and reviewed our game plan. He was all set and my oldest daughter and I headed on a walking adventure through town. This was a Big DEAL. Madilyn lasted about 20 minutes at the game!
If we had not planned that this could happen I am sure we would have been very disappointed. Time meant nothing to me today except for just enjoying every moment of this daring adventure. We focused our energy on making it a spectacular day for our family even if that meant only spending 20 minutes at a college football game.
I hope that I will someday process all that life is with having a child with Spina Bifida and not measure time in doctors appointments and such. I am not 100% sure how to do that. Today was a start.