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A Mother's Letter To The White House On Behalf Of Her Special-Needs Children
By Karen Lynn Vidra, The Texas Tornado
Tuesday, April 29, 2003
Louisiana writes a letter the President of the United States. It is about her special-needs children and what some of them have to go through in their everyday lives.
Tuesday, April 29, 2003~
Dear Mr. President:
I am the adoptive parent of 50 special-needs children. My children range in age from two on up to 21 1/2 years old, and they come from different places around the globe: The United States of America, Canada, Central and South America, Mexico, Germany, France, Bosnia, The Netherlands, Russia, Iran, Kenya (Africa), India, Japan, Korea, and Vietnam. All are, as I said earlier, special-needs, meaning that they are either older, racially mixed, or have more than one significant handicap that has affected their day-to-day lives. They have handicaps ranging from epilepsy, learning disabilities, and Tourette's syndrome to Duchenne's muscular dystrophy, severe cerebral palsy and mental retardation, and severe juvenile rheumatoid arthritis.
We live in Nashville, Tennessee, and my husband of nearly 13 years and I are both employed. I am a registered nurse at a local hospital here in town, and my husband works at Wal*Mart as a greeter. We both manage to do our jobs very well, and we pride ourselves in raising our large brood as best as we possibly can.
We are NOT, in ANY way, perfect (nor do we claim ourselves to be); we often make mistakes, and we have regrettably made hasty (or even disasterous) decisions that have jeopardized the lives of several of our more sicklier children.
I am writing to you, Mr. President, because I want you and your wife, Laura, to be aware of our situation. Please do NOT, for ANY reason, think that Bill or myself are asking for financial assistance because I am here to tell you that we are NOT. Yes, we may struggle with paying our bills on time (at times, our bills eat us alive, in particular, the medical bills), and yes, there have been times where we have had to make do without, but Bill and myself wouldn't trade this life, our raising special-needs children, for the WORLD. Our children are what keep us going, and the positives FAR outweigh the negatives by 100 to one. God has opened up His heart, and He has given us these precious, beautiful children nobody else wanted to raise as our own. If you could just SEE some of the daily Miracles that we have encountered, you would be absolutely AMAZED because you wouldn't believe it unless you have seen them for yourself.
Take, for example, our now ten-year-old son and daughter, Johnathon ("Johnny") and Ronee' Le-Anne.
Johnny and Ronee' are true Miracle Survivors in every sense of the word. Both were born very premature (three months, to be exact; Johnny weighed just 2 pounds, and his sister, who is a twin, weighed only 1 1/2 pounds), and they have struggled throughout their young lives. They have struggled with numerous respiratory problems for most of their lives. They also have serious health concerns that affect every aspect of their daily lives. Johnny has Duchenne's muscular dystrophy that was diagnosed when he was just one year old, and it has progressed to the point to where he needs an electric wheelchair to get around, and it is now starting to affect his breathing. He is now using supplimental oxygen on a daily basis. Doctors have given him, at best, only a few more years; he is not expected to live long enough to become a teenager.
His sister, meanwhile, has severe systemic-onset juvenile rheumatoid arthritis that causes excruciating pain in her joints on a daily basis, and sometimes she needs two to three hot baths a day to soothe stiff and painful joints. She uses Lofstrand (forearm) crutches to get around, or a wheelchair for longer trips, or on days where her arthritis is flaring up. She also has allergies and asthma, and she has spent many a time in the hospital, and she has nearly died on more than one occasion (but her asthma and allergies are FINALLY starting to improve as she gets older).
Both Johnny and Ronee' have survived catastrophic illness (Johnny had meningitis twice, and Ronee' has recovered fully from a stroke), and their doctors are amazed at their dogged determination and willingness to survive and to overcome even the greatest of odds.
Their sister, Deborah, has a story just about as dramatic. She was born in Iran nearly 13 years ago, and she was given up for adoption when it was discovered that Deborah (then known as "Bapsi") was born with myelomeningocele spina bifida that left her lower half completely paralyzed, and also without arms or hands. She also has severe asthma and other respiratory problems that requires oxygen on a daily basis. She controls her electric wheelchair by means of operating a lever with her chin, and she wears prosthetic "hooks", which serve as her "hands". She is absolutely amazing, and other people are blown away as to what she can do. She can do so much, and she also has a beautiful soprano singing voice.
Another child who has surpassed all expectations of doctors or medical professionals is our 11-year-old daughter, Jodie, who just recently learned her first words this past year. She was born in Korea, and even from the start, she had problems. She was severely mentally and physically delayed, and at the age of one year, she was diagnosed with severe spastic quadriplegia cerebral palsy that has affected her entire body. At the age of three, she was flown to America to be adopted, and she joined our family shortly thereafter. Jodie, as she is now called, is now 11 years old, and she has grown into a beautiful little girl with an angelic smile and a sunny personality. She still can't walk, talk (much), feed herself, or do much else for herself, but she has overcome so much, and she is finally starting to make her wants and needs known. If she can't talk, she will let us know just how she is feeling inside by making noises, and her "noises" are happy or sad, depending on the situation or what she is going through, and she is very good at expressing her needs and wants. She will probably never outgrow diapers or eat normally (she is fed by a tube in her stomach), but she is a Miracle Child, and she has brought us endless moments of hope and joy. She has taught us patience and love, and she has taught us that even the most severely disabled can teach others much and that they, too, are capable of accomplishing many things.
We have a million different other stories about our other children that we could tell; but it would take over 100 pages to tell of all their accomplishments. Each child has their own story to tell, and each child has overcome tremendous odds. These children have survived abandonment and neglect, physical/emotional/mental abuse, complicated births or surgeries, the loss of family or home,
and other things that no child should ever have to endure in their young lives.
So you see, Mr. President, even though we are parents of special-needs children, they are our CHILDREN first, and their handicaps shouldn't have to matter to other people. They are our children first, and their handicaps are only a SMALL PART of what makes them unique. We are often subjected to nasty or inane comments or stares, and this can get very old and annoying after a while. Why can't people just learn to overlook their outward apprearances, or even their skin color or nationalities, and just treat them like the NORMAL kids they are (but then, what is "NORMAL" in today's world?)? Sure, they may use things like crutches, wheelchairs, or walkers, or may require things like prosthetic limbs, oxygen tanks and tubing, or hearing aids, but my husband and I DON'T see all that. Instead, all we see are our children, and they are ALL beautiful and special in our eyes! They are our CHILDREN first, and their disabilities come SECOND.
Thank you, Sir, for allowing me to take the time to write you, but I just had to tell you about our International Family and why they are such a integral and important part of our lives. Our children are our LIFE and our reason for living, and I want to thank you for take the time to listen to me ramble on in this letter to you.
May God bless you and your family, and may He keep you all safe from harm. And may He continue to bless America and her people!
Most sincerely Yours,
Louisiana M. Sandusky, mother to 50 special-needs children, Nashville, TN.
P.S.: I am in the process of writing a book about our family. It is tentatively going to be entitled "A Family Made From Rainbows and Miracles: A Story of International Adoption and Love". I hope to have it completed by fall, and I hope to have it published by Christmastime.
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|Reviewed by Karla Dorman, The StormSpinner
|(((karen))) powerful, moving story...showing a lot of courage and hope. well done! (((HUGS))) and love, karla. :)|