Lightning Williams, Louisiana Sandusky's oldest daughter who lives in Colorado, emails her mother's friend who lives in California. Like her younger brother, Johnny, and her oldest child, Jamee, Louisa Mason has muscular dystrophy, and she wants to offer Lightning some encouragement and hope.
Monday, May 23, 2005, 9:22 a.m., M.D.T.~
Dear Louisa Mason~
Thank you for your encouraging letter; it couldn't have come at a better time. Today, Jamee had a rough one in physical therapy, and it was hard to hear her screaming and crying as the therapists worked with her, stretchiing her legs, and stretching her arms. I got so upset I had to leave the room and go to the cafeteria, just so I could clear my head. We just got home, Darnell (he's my husband) just brought us home from the hospital, and I am sitting here, feeling sorry for myself and for Jamee. Jamee is only six, going on seven, but she is facing a monster that is both frightening and undaunting, and I don't know what the future holds for her (or for us).
I have tried to be a good mama to Jamee and the boys, but I have serious physical disabilities myself that are very challenging. I have a movement disorder, cerebral palsy, and I have the spastic kind. All four of my limbs, my trunk, and my head are affected, and so is my speech, and when I DO walk, I walk for short trips on a pair of forearm crutches. My balance is not good, so I fall a lot, so I feel most comfortable when I am in my wheelchair; in my wheelchair I feel safe and secure. I was born with cerebral palsy, and I have had to live with this disability all my life. In addition, I have seizures, and because of this, I am unable to work; I get full disability benefits every month. Still, my kids ARE my life, and if I could, I'd do anything in the world for them! I just love them all so much, and ever since Jamee got sick, I have been on edge, and I wonder if I am crazy for wanting to harm her, so she no longer will have to suffer.
I have tried to talk to my pastor at my church, and also have been seeing a counselor, as per my mother's requests, and it's helped; but somehow, in the deepest, darkest part of my brain, I still have the notion of wanting to harm Jamee or kill myself so I won't have to deal with this anymore. I have been spending a lot of time reading the Word and praying, and I think that is what has kept me from harming Jamee or myself; but the feeling is still there, like a sinister monster threatening to devour me. I also have been writing poetry or in my journal, to help me deal with the demands of Jamee's illness, and also with the needs and demands of not only Jamee, but ALL my children, and at times I wish I could just get away from it all, take a sabbatical, if you will.
I have been thinking of going to Tennessee to see mama and daddy (and of course, all my brothers and sisters, and get to meet my newest brother and sister from Sri Lanka, Arjun and Rani), but something has held me back; and I guess it's partly because I don't want to see mama cry when she sees Jamee walking on crutches or braces on her legs. The last time she saw Jamee (at Christmas), she was just diagnosed, but she could still walk with no problem (she'd fall a lot, but she'd get right back up), but now her disease has progressed, and she now must walk with forearm crutches and wear braces on her legs. But she still has a strong spirit, and she has a very good attitude, even with all the therapy sessions and having to go to the doctors' every so often, so they can monitor her condition. She HAS gotten weaker, but she still wants to do all the things she can. I am afraid what mama's (or daddy's) reactions will be to Jamee, and I guess this is why I have been scared to go back home to Nashville.
Do you think I am nuts? Or do I need to be locked up somewhere? I wonder about that sometimes, I have had a very hard time of it lately, and I have been an emotional mess. Please keep me in your prayers, and please write back; I would love to write to you again! Mama talks about you and your daughters all the time, and it's like I already know you from what mama has told me about you! God bless, and thank you for the prayers. In the meantime, I will keep little Aerial in my prayers; maybe one day she and my daughter can meet face to face and become friends!
God bless you, Louisa!
(((HUGS))) and love, a new friend in Colorado (I live in Loveland), Lightning Ntzoke Marie Williams (nee' Sandusky). :( >tears<
P.S.: Here's a picture of Jamee on one of her better days. She has those on occasion, but more often than not, p.t. is such an ordeal for her. Enjoy!
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Monday, May 23, 2005, 9:22 a.m., M.D.T.~
