No One In This Corner
I have absolutely no one in this corner with me. I’m truly in it alone. Fuck! I cannot gather up the words in my disarray that overwhelming circumstances have scattered. I’m all over the place, gathering, gathering up the details in my thinning, but desperately loyal arms. What did anyone mean when they said “If there’s anything I can do…”? I don’t need a sympathy card or a casserole. I need someone in my corner. I don’t need someone to fight the disease. I’ve been elected to that responsibility. Can anyone guess the kind of bureaucratic waters I am forced to navigate (if I’m to survive), when I should be spending this precious time and energy with my so deserving baby boy? I’m alone all day with my son who has no siblings. He has me. But I have to somehow do it all. I love to plan each meal, feed him, dress him, change him, potty train him now, teach him to speak and walk and to eat by himself. But between these things, I must plan for my incapacitation, my immobilization, my expensive medical needs, my personal care needs, my needs for absolutely every little thing, and who the hell will fill in for me in getting Aiden all of his needs met… when I’m not able? I can’t pay for this care? For any of it. I’m so exhausted and overwhelmed. I’m stretched and maxed out physically, mentally, financially. There are lawyers to consult and hire, Aiden’s future to protect now, not later, insurance companies to fight, and I have no one in this corner with me. It would be so easy to ignore the future I’ve been dealt and just live happily in the present, but it’s not my future I’m concerned with… it’s Aiden’s. So, no… I cannot know my 2-year-old son stands to lose so much… his mommy and his home, and go gently with this flow. I have so much to do to assure my care and Aiden’s too, but I am only one person, and ALS sits heavily on my every move. How will I do this all without disintegrating? “If there’s anything I can do…” I have a list.
-kara