I normally don't post these thoughts for a variety of reasons, yet this one I felt compelled to do so...don't ask me why.
A deep pit in my stomach made itself known to me this morning as I was with Ella. I had taken her to Aqua Therapy then to see my Dad in his nursing home. Since I was driving my car I didn't have her power wheelchair and I forgot to bring her manual chair. That was fine...I didn't mind carrying her.
As we waited for the elevator after our visit with my Dad I was able to take a good long look at Ella. I don't think she knew I was watching her so intently, or maybe she did and didn't mind, but she never once looked at me for a full minute. She kept her gaze on the closed doors of the elevator waiting patiently for its arrival.
My eyes sank deep into her face, watching as she silently allowed me to. I noticed something I hadn't really taken notice of in a long time, probably since the months leading up to her diagnosis last summer. Her neck. If you look closely at her neck you can see her little muscles quivering. It's that sight that turned my stomach into a ball of mush.
My eyes grew heavy as the thoughts of SMA filled my body almost as it fills hers. My brow furrowed as the quick, methodical contemplations of what having a terminal illness means for my daughter and my own neck grew tight. My eyes wandered from her neck and took sight of her light, fluffy hair. Every hair on her head is accounted for by God. I wondered why she has SMA. I wondered about what will happen with my Ella.
While this minute was progressing I found myself holding her tighter than I usually do, most likely an unconscious response to the pit in my stomach that had taken over my entire body. At one point I must have squeezed just a bit past her comfort level because her head turned to me allowing our eyes to meet.
My body relaxed.
Her beautiful brown eyes took mine. She knew I was struggling with something becasue she lifted her hand in the "praying mantis" way she does when she is trying to get her hands above her shoulders with no support, and touched my face. Her mouth opened and her smile filled her face as light careened off her cheeks. When God made this one he certainly placed a loving spirit within.
The elevator chimed its arrival and our gaze was broken by the surroundings we found ourselves a part of. The moment had passed yet the aftertaste of it on the ride home lingered in the car. A taste of SMA when allowed to envelope your soul is bitter and rancid; it clings mightily to your body, invading your ability to recognize your own being. It is a disease that strikes the young and has little mercy. It is a disease that strikes the family in a place where many diseases never dare to go. It has its power and knows its own destructive force. If left unchecked, it can and will drape itself unceasingly over your life, taking pieces of it as it leaves parts of your soul scattered in despair.
We fight this everyday. We arm ourselves with the shields that are designed to protect us from such moments. The moments, however, are necessary as they provide a reality check that must be embraced. To know your enemy deeply and intimately is to defeat your enemy. As painful as that one minute was it brought me to a place where I can know SMA and its horrors on a level that defies logic.
I know I have been in that place before and I know I'll be there again. This was, however, the very first time I was consoled by the very one who harbors the SMA.
