I walked into Ella's room to get her from her nap. Something that Lindsay and I do everyday. There's a "ritual" to the whole process. Walking into the room the stand-up fan is turned off, then one gets to the side of the bed and turns off her pulsoximeter. As she lay on her bed patiently we proceed to "disconnect" her from the bipap machine. She asks to "sit up" and we cradle our hand gently behind her neck, providing the necessary support, as we push her up and into the sitting position. The cord that leads from the pulsoximeter to her big toe is taken off. She's free from the constraints that SMA has placed upon her as she slumbers. She sits in her bed and makes her request to charge (for those who don't know what her "charge" is; it is when Ella pinches [with her index finger and thumb] the skin in-between your index finger and thumb).
On this particular day when I went to get her from her nap and the ritual was complete up to the point of "charging" I sat on the bed with her...that's when it happened. It was short-lived but took me by surprise.
The feeling I had was quite intense...
It was a feeling of being so utterly tired of her having SMA. Her hands, fingers, feet, and toes are so small. Her arms and shoulders are tiny. The limitations placed upon her never seem to go away. I felt bad for her. I wished I could do something, anything, to take SMA away from her. The depth of my parental love, protection, and self-sacrifice ran into unchartered territory. It brought me to a place where I have never been before.
And then it happened again...as quickly as it came the feeling fled and was replaced...
I saw her for who she really is. I saw into her eyes, her face, and her beauty. I watched as her smile opened up her soul and the brilliance of her essence filled my heart. I became amazed at the incredible progress she has made as of late...I found myself in awe to be her daddy.
If you have kids...hold them close to you every day. If you have no kids, hold those you love close to you everyday. If you find yourself alone, hold yourself in the warmth of who you are.
Yes, SMA may place, without reservation, limitations on my little girl. These are only physical limitations though. She fights through them each and every day.
And while SMA may claim what it can, it will never claim her.
