Lightning Williams, the oldest adopted daughter of Bill and Louisiana Sandusky, writes of her life, even with having a disability that affects her daily life.
I am a person first, and I am a person with cerebral palsy SECOND. My handicap, which I have had since my birth nearly 22 years ago, is lifelong, and unfortunately, it will never get any better, but I still live a fairly normal life.
I am married now, to a wonderful man named Darnell Williams, and we have three beautiful children, two boys (Le'Andre' Reaux and the baby, Derick William) and a girl (Jameisha ["Jamee"] Nichelle). They keep me busy, and I feel blessed to have them. They are such wonderful and beautiful children, and they are all growing so fast!
I do not work, because of my disability (my cerebral palsy affects my movement, and I have a lot of trouble walking), but I still have a very happy life. My husband, who is an attorney, provides for the children and myself, and we really don't have to worry all that much about money (plus I get a disability suppliment every month, which helps out even more). I am in a wheelchair a lot of the time, but when I DO walk, I do it for short trips, and I use forearm crutches. I don't really like the crutches because I am just not that steady on my feet, and I have fallen more times than I can count when I've been on my crutches, and I end up with bumps and bruises. And then the next day after I have fallen, I am so stiff and sore I can't hardly STAND it!
Besides the spasticity and the trouble walking, my cerebral palsy also causes me to talk slower, and not as clearly as I would like. I also drool at times, and it is embarrassing when my husband has to wipe my chin when I eat or when I drool. Sometimes I end up messing up my clothes, and then I end up wearing a bib when I go out. People then stare, and it makes me uncomfortable and embarrassed. If I am having more spasticity than usual, my husband will help me eat, which only generates more stares or even comments from other people.
Besides the cerebral palsy, I also have a frozen hip; and I have scoliosis. I am crooked, and my one hip sticks out; and this is one reason I fall because I am not balanced, and I don't feel so secure when I am on my feet (or on my crutches). I prefer to use my wheelchair whenever possible. It's the easiest way for me to get around.
I wish I could move or talk easier than I do, but compared to a lot of people with my disability, I am not so bad off. Some people with c.p. are so disabled they need with just about everything they do, and they are in institutions because they can't take care of themselves. They are also mentally retarded, and they are more like giant babies than adults because they need help with eating, getting dressed, or even going to the restroom. Some of these people are so disabled they have to wear diapers; they have absolutely NO control over their bodily functions. Like my little sister, Jodie, or my little brother, Todd, as two examples. They need help with every aspect of their lives, and they are both profoundly retarded in addition to having severe quadriplegic spastic cerebral palsy. They will always need help throughout their whole lifetime, and they will never be able to do much for themselves.
I guess, when comparing myself to Jodie or Todd, I can call myself blessed. I can have a family, get married, take care of my husband and my children (who all keep me pretty busy; it's bad enough trying to handle several kids when you don't have a disability; try handling several kids WITH a disability; that makes it even more challenging!), and do most everything (EXCEPT walk well or talk clearly). It is good that I have the help of my husband or even my neighbors if my husband isn't home. My neighbors do an excellent job of checking in on me, and since they know that I am disabled and am USUALLY in a wheelchair, they will go out of their way to go to the store for me or help out with the kids if they get to be TOO rambunctious!
During most of the year, I can get around fairly well, but in the winter, I am usually homebound because my wheelchair doesn't travel well in snow or on ice, and I can't get out except to go to doctor's appointments or to take the kids to THEIR appointments. This is when my neighbors come in handy; they will help me into the van and load me in and lock my wheelchair in place; and they will drive the kids and myself to wherever we need to go. I can't drive, so this is why my neighbors drive me around (or my husband when he is off work or is home). Being in a wheelchair is a major hassle anyway, but it is especially so when it is cold, snowy, or icy out.
Yes, I may have cerebral palsy, but I am treated FAIRLY normally by my husband and my friends, and also by my family; and if you can just learn to look beyond my wheelchair, slurry speech, or my spastic limbs, you'll find that I am a nice person who has a beautiful family and is happily married and has a comfortable and good life. I am just like most people; the ONLY thing that makes me different is that I don't walk as well or talk as well, but this hasn't hampered my zest for living or my accomplishing my goals in life! I may be disabled physically, but there is NOTHING "disabled" about my mind or my capabilities, and I am much more than just a "person who happens to have cerebral palsy" and is in a wheelchair a lot of the time!
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?
