Louisiana Sandusky writes her new friend another letter. Her new friend lives in Del Rio, Texas.
Friday, August 13, 2004, 10:23 A.M., C.S.T.
Dear Diane:
Thank you for writing back to me; it is so nice to hear from you again! I hope this finds you and your family well!
I am so sorry to hear of your health problems, and also the health problems of your husband, Hildago. It must be hard at times for him because I am sure he wants to be able to provide, but he can't do so because of his own health struggles while you go out and earn a living for the family! That has got to be so hard living on just one income! It was that way for us for a long while (my husband, like Hildago, has back problems [he has, in fact, had back surgery twice, but it has proved to be only partially successful], and he also has high blood pressure and asthma, as well as degenerative arthritis that requires him to walk with the assistance of Lofstrand crutches), but my husband is now working five days a week at Wal*Mart, where he is a greeter. He has been with Wal*Mart for over two years now, and he is doing quite well for himself. He feels sufficient, and he knows that he is doing a service for the community, and this is a great way for him to get out and meet people, and, at the same time, earn a living. He loves his job at Wal*Mart, and he has proven to be a hard and dedicated worker; and the people there just love him to pieces! (Of course, because he IS working, his disability pay HAS been cut rather generously, but he still does get SOME disability every month.)
You asked what some of my kids' disabilities are. Well, here goes: I have a son (Johnny) who has Duchenne's muscular dystrophy, and even though he isn't expected to live beyond the age of 14, he has been nothing short of a blessing, and he has baffled doctors with his will to live, and with his courage. He is a special little boy, and he has proven to be a winner in his personality and spunk! I also have a daughter, Ronee' Le-Anne, who has systemic-onset JRA (juvenile rheumatoid arthritis), asthma, and allergies, and I am happy to say that her breathing has improved dramatically, and it is hard to believe that she is the same little girl she was when she was little, when she was so sick. It used to be that she would have to go to the Emergency Room every week for her breathing; now it seems that it is MAYBE once or twice a year when she DOES go to the E.R. on account of her breathing; but now she seems to be breathing much easier, and she is a much happier (and healthier) child!
We also have a daughter, Deborah, who has spina bifida and is paralyzed from the waist on down; and she also has asthma and is partially dependent on oxygen whenever her breathing acts up. In addition, she was born without arms or hands, so daily living for her is most definitely a challenge. Another daughter, Enriquesa, our youngest girl, was born without arms or hands, and she was also born without legs. She was also born an achondroplastic dwarf, which means that even as an adult, she will never be more than 4' in height (that was, if she HAD legs); but she wears prosthetic legs and arms and does beautifully! She has such a "can-do" spirit and attitude about her, and there is absolutely NOTHING that she won't try to do! She is a little go-getter, and she wears me out at times! One can hardly keep up with her at times! LOL
We have a son, Richard, who was abused as a baby, and he was left with permanent damage that resulted in a permanent tracheostomy, and he also has ongoing emotional issues that he is still getting treatment for, and we have several children with epilepsy. We also have several children with CP (cerebral palsy) and mental retardation (Jodie and Todd, as two examples), and we have a daughter (Lightning) who has CP (but is NOT mentally disabled in ANY way!); and we have a son (Roberto) who has Down's syndrome and other health problems. We have two daughters (Sun-Hee and Dianne) who are both visually impaired, and we have two sons who are hearing impaired (Mario, who is profoundly deaf, and Johnny, who lost most of his hearing after a bout of meningitis he had as an infant; he also has visual deficits and some brain damage and partial weakness on one side of his body, thanks in part to a stroke).
We have a daughter (Starlight) who has diabetes and a daughter (Rhiannon) who has cystic fibrosis, and we have a son (Jo-El) who was burned over 80% of his body and now carries heavy scars and disfigurement to his face and body, and we have a son (Kwame', our baby) who has heart problems (he has had several heart surgeries already and faces more in the future). We have kids with learning disabilities, and we have a daughter (Melizza) who had a stroke at the age of 13, and is now a hemiplegic (partially paralyzed on one side) and also suffers from schitzophrenia (but her mental health problems are controlled with medication, thank goodness!).
We have a son (Andre') who had polio as an infant and is a paraplegic, and we have several other kids who have asthma and allergies; and we also have a son (Anh, our oldest boy) who lost his leg to cancer at the age of six, and he has since had a second round of cancer at the age of 11 (but now, at the age of 17, he is now cancer-free, thanks to a Miracle Healing from the Lord Above!). He is healthy and happy, and he is now gaining back lost weight and his appetite; and it is pleasant to see him eating again!
Yet, even with all the challenges that their disabilities (both noticeable and "hidden") bring them, our kids have triumphed beautifully over them, and they are all good, loving kids with sweet personalities; and they have taught the world what it means to succeed in a world not geared towards their needs, and they have proven to people that even though they may be disabled and broken in body, they have good, capable minds, and they are just like any other kid.
Our non-disabled kids have learned much about life through their disabled brothers and sisters, and they have become more tolerant to things that are "different", and they are their biggest supporters, their biggest advocates, and they will fight tooth and nail, to make sure their brothers and sisters have the same opportunities to succeed in life as anyone else who is NOT disabled in any way!
You asked, too, besides about my kids' problems, about Ronee' and whether she has any CD's out. Well, Ronee' DOES have two CD's out: her earlier one is called "Little Dark-Eyed Cajun Girl", recorded four years back, when she was almost eight, and her new one is due to come out any time now. We are waiting for the shipment of the CD's so we can send them out to radio stations and other promotional outfits. That one is called "Cajun Spice". If you want, I will send you a copy of each CD if you are interested! She has really come out on her own as a young singer, and she is also an accomplished little musician, playing not one, but five instruments (she is self taught on all but one; she taught herself to play!)! She plays the Cajun French accordion, fiddle, guitar, piano, and banjo! She is going to learn the pedal steel guitar and also the mandolin; she is very musically inclined, and it doesn't take her long to pick up a new song (or instrument)! She is absolutely incredible!
If you must know about my faith (my religion, if you will), I am a Christian. I was raised Roman Catholic myself, but three years back, I gave my heart to Christ, and I am now considered "non-denominational". I go to a Pentecostal church, and I get so much out of it! God has been awfully good to our family, and it seems that the past several years have been especially meaningful for my family and myself.
Well, Diane, I have to go back to work now (my break is about over; I get an hour break), so I must leave. I will write more later; thanks for writing! It is good to hear from you again!
Have a great day, Diane, and God bless you mightily!
(((HUGS))) and much love, your Tennessee friend, Louisiana Mayrah. :)
Hi Karen. This is a wonderful write. I enjoyed reading this very much. Have missed these stories of yours. Trickster.
Reviewed by Connie Washburn
8/13/2004
Touching letter - lots of heart! All kids have their challenges, some children's problems are more obvious than others but they all have to face whatever life throws in their direction. NO one is exempt. Life uplifts, challenges, chastens and strengtens us all.
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.
Friday, August 13, 2004, 10:23 A.M., C.S.T.
