SMA is a progressive, degenerative disease. It's robbing my daughter of movements we take for granted. It's debilitating to her in so many levels. It strips her of the ability to even lift a cup of water unless we fill it just right to keep the weight appropriate for her weakened muscles to manage. It destroys joints and it wreaks havoc on the spine.
As a parent of a child with SMA I can honestly say that this disease beats on the emotional and physical well-being of me.
At night when the house is quiet and the clock is turning its hands without anyone looking; at 3 a.m. I make sure Henry and Ava's covers are doing their all important work of keeping them warm...when I reach Ella's crib I needn't adjust the blankets, for she hasn't moved since we put her down. The light of the moon sits restfully on her brow and I see her frail body lying there, housing the soul we know as Ella. I watch her sleep for a moment and then touch gently her head, with a finger I wipe the sweat that has accumulated due to decreased oxygen (SMA kids tend to get less oxygen into their bloodstream during sleep…night sweats are one result). I kiss my two fingers and run them over her face. I walk out of the room and to my bed. I lie there. I wonder what will happen and my mind refuses to go there...I know what will happen and I hate it.
Each day I grow closer to Ella as she draws my love to her without effort. All my kids do that. It's what I most cherish about them.
Each day when I wake up I know I will battle SMA in my head, my heart, and my soul. Each hour presents itself with its own agenda. Some hours bring to me heartache, others slap me with anger, and still others take me away to a place of sadness and despair, hopelessness and anxiety. Still others offer me a reprieve; a chance to regain who I truly am.
I am all right...then I pick her up and feel her body slump against gravity. Together she and I fight it. I can't fight too hard for her for she wouldn't be able to handle the movements I would impose...it's an awkward dance we do with gravity.
I am all right...then I hear her cry from across the room and see her slumped over on the floor, unable to get up, or even move herself for that matter. She calls for mama or dada…her little voice rings through the house…the tone is all too familiar now. Sometimes Ava or Henry will help—they are such a blessing.
I am all right...then I see her fingers hyper-extended and know that her ligaments are not able to do their job properly...sometimes she looks at her hands in a funny way. I think she knows something is not right with them. I wish I could take it all away.
I am all right...then a flood of emotion fills my being; sometimes it's fear, sometimes it's love, other times it's anger, and often it's numb. I understand SMA yet I cannot grab a hold of it yet...
I am all right...then I see her smile and my heart breaks for my little girl.
I am all right...then I cradle her in my arms before bed, sitting in the rocking chair, telling her, "Everything is going to be all right." She looks at me with her big, soft, beautiful eyes and her mouth curls up in a slight smile...I am drawn to her...I love her with all of my heart....which aches for her life.
I am all right...then I find a quiet moment and I ask God to continue to carry me. I look back and see that He has been for quite some time. In His arms I search for His eyes, His smile, His voice to tell me that "Everything will be all right". My life right now is a confusing mess. I cling more tightly than ever to my wife and kids...I do, however, build a wall of emotion around myself. A wall that I will not let be penetrated for it is too scary for me to let it all go. My life has thrust upon me numerous trials and my wall is thick. I know God has been gently taking my wall apart for me, I wish He'd hurry up as I feel as though it is closing in on me…darkening my world once again.
I am all right...then SMA takes another crack at my family. It threatens our way of life, our quality of life, and presents itself as a menace to our well-being. It threatens to tear us apart. It is persistent and unforgiving.
It's a horrible disease.
I grow more and more tired each day. I am losing articulation of how I feel, for my emotions have been over-taxed; I cannot keep a hold on them long enough to identify them...for as quickly as one emotion comes; it leaves--and another one replaces it...the cycle continues 24/7.
There is no rest for the weary.
I am all right...then again, I can't really say that for sure.
