We once again embark on a path with our Ella that keeps me standing in contemplative wonder. She has kept her food where it belongs for a good month now. She hasn't, however, gained any weight.
Her nutritionist and Lindsay sat down this week and put together a plan. We have to change her feeding routine in an attempt to get her to eat more food orally. Within the past month she has shown in increased interest in table food...the plan is to modify her schedule of feeding tube feeds to allow her to be more hungry during the day and in turn, we hope, she will take more food by mouth.
Worth a try anyway.
Contemplative wonder.
I routinely find myself contemplating deeply about Ella. I contemplate about her disease. I contemplate about her fate. I contemplate about what's happening inside of her body. I contemplate about what it must be like to be her. I contemplate about what I can do to help our little girl. I contemplate about what has happened thus far.
Amidst the contemplation streams in the wonder. Not the kind of wonder that keeps one guessing; the other kind of wonder...the awe.
I am in wonder how a soul as gentle as hers has found its way to us. I am in wonder about how God has allowed this disease into her body while at the same time He's given her so much. I am in wonder at how quickly things can change, for better or worse. I am in wonder that she strives to do all she can despite her SMA. I am in wonder at how full of life she really is. I am in wonder at all those who surround us support us in so many different ways. I am in wonder that our family has been through so much in such a short time.
Beside the contemplative wonder I must say that I am fortunate enough to witness the spirit of the human soul in Ella. She is determined.
Despite her fragile state she remains determined.
Despite her challenges she remains determined.
Despite her SMA, she remains determined.
Watch the video below. Watch is several times. Imagine the struggle her body must be going through. Push the wheelchair with her. Feel the weight of gravity pulling your shoulders down with each stroke. Take hold of the goal she has in mind. Allow yourself to breathe as she does with each stroke of her arms on the wheels.
Fall in love with her triumph.
