Lightning Williams, oldest (adopted) daughter to Bill and Louisiana Sandusky, writes her parents a letter. She lives in Colorado.
Tuesday, September 7, 2004.
Dear Mama:
I am sorry for not writing sooner, but raising five kids doesn't leave me with much free time. Now let's add disability to the mix..NOT easy! But I still do well, all things considering!
I am well, and so is Darnell; and the boys are well, too, but I am really worried about Jamee. She has been having trouble with her balance and with her walking for a little over a month now, and she also seems to be suffering from unexplained weakness in her muscles. She fell at least half a dozen times today, and of course, she laughed and got up, but this just isn't like her. She used to go on for hours; now it seems that she can only go on for so long before she gets tired!
We took her to see her pediatrician last Friday; and after doing a thorough examination on our daughter, he pronounced her healthy (all her shots are up to date, no problems there!), but he was concerned about her clumbsiness and her weakness; so he has made an appointment at the Muscular Dystrophy clinic, to see if the problem is neuromuscular. That doesn't sound good; and Mama, to tell you the honest to God truth, I am scared to death! I have seen what neuromuscular disease can do to a person (my little brother, Johnny, for example; it still tears me up inside to see all that he has had to endure!), and I am scared what it may do to a sensitive, shy child like Jamee! I don't think she could live with the fact that someday she may face life in a wheelchair, too, just like her Mama!
And I am worried that I won't be able to care for Jamee, Tyreese, Tyrell, Daniel, or LeAndre' once Jamee ends up in a wheelchair! I already have more than enough on my plate now, what with five little kids under the age of eight (plus two newborns to contend with!); how in the HELL am I going to MANAGE?? I am afraid that something will happen to one of the kids, and I won't know what to do in case it DID happen!
I don't like the thought of my daughter becoming another statistic to neuromuscular disease: seeing Johnny already has me scared for his future; now my daughter, my very own flesh and blood, may be facing the same exact fate! She may end up in braces or in a chair, too, just like my little brother, and she will only get worse in time, and Mama, I am sorry, but I just can't handle it right now! What are we going to do? How are we going to afford for her treatments or her medical care if it DOES turn out to be md or any of the other neuromuscular diseases out there? I don't want my Jamee to become another "Jerry's Kid"; I want her to be a happy, healthy, normal little girl with NO worries! She shouldn't be having this going on with her: she is only six years old, just a little girl!
I am sorry for burdening you with all of this, but to tell you the truth, Mama, I am SCARED! I am scared for what may happen, and I don't want to see my baby girl end up in braces or in a wheelchair!!
I will write later; I am crying too hard! I can't see, for all the tears that keep falling from my eyes like rain!
Until later, Mama, take care! Love you and miss you!
(((HUGS))) and love, your eldest daughter, Lightning Marie Ntzoke. :( >tears<
P.S.: Jamee's appointment at the muscular dystrophy clinic is on Friday. As soon as I find out anything, I will be sure to get in touch with you as soon as we find out anything! Be praying for us; we really could use a Miracle about now!
It's almost Christmas. Lynn Basil is writing her last book about a secret entrance into the magical doll land of Sha Bebe that she loves so much. Bagannos have taken over the world! Lynn finally meets her dolls in real life. Can she write in a Secret
Let this coming of age story of a boy named Bean take you back to a simple time. Set in a small southern town in the 1960's, encircled by a river and gleaming white cotton fields.
A wicked Cajun Fairy named Robes Pierre entered the impenetrable Magical doll land of Sha Bebe. Queen Faustina, the ruler of the doll land, thought she had destroyed him, but he's back! Will the doll land survive his evil ways?
Tuesday, September 7, 2004.
