Ryleigh has shown me the importance of the small moments in a day that are joyful and happy.
She is still embarrassed about her palsy on the right side of her face but still cracks the funny jokes, smiles her half smile, and gives me a wink — so uplifting.
Last night she was given permission to eat soft foods only but no liquids. She took total delight in eating chocolate ice cream right from the tub. She came up with this very precise way of eating it. Scooping around the edges so it was slightly soft, then making it even along the top as she ate. She was taught how to swallow more effectively as it does not come automatically now for her. She does each bite with purpose and correctly. But, each one is pure joy and deliciousness to her because this is the first solid food she has had in days. Now, to be honest she would rather be jumping into a big plate of cheesy nachos but she cannot have solid food until we know what is going on and she has had a swallowing assessment. She is trying to come up with a way to make nachos and cheese a soft food — she has decided putting it in a blender would not work.
The most precious moment I have had with Ryleigh the last few days was last night. She wanted to bathe. It was the first time Ryleigh has really tried to use her leg and it saddened me to see her trying to think through each step. Lifting her leg naturally into the tub was very difficulty and her independent streak was trying to get it to lift – but all the will and determination was not successful and she had to ask me for help. I bent her leg and put it in the bathtub and she proceeded to go in…..all I hear is a huge sigh of comfort and relief being in the warm bath. They have a detachable shower head so I washed her hair and then I basically moved the warm shower around to help stimulate her nerves. She was in utter bliss – enjoying the soothing feel of the water, sighing and telling me how much she loves me. It was a beautiful moment and the pride and love I felt for her was infinite.
Whatever happens……it is small joys like this that make everything manageable.