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But Not Enough To Tell The Truth.: Special Needs Parenting 101 by Karen Lynn Vidra, The Texas Tornado
Wednesday, August 15, 2007
Rated "G" by the Author.
A mother writes about her youngest son, Teague Matthias, who was born with brain damage and cerebral palsy and the challenges that raising a severely disabled child puts upon the family.
My oldest son, Texas Michael, knows that there is something going on with his younger brother, Teague Matthias. He knows that Teague isn't like other kids; because of it, Teague can't go to school.
Teague, at the age of six, cannot take care of himself. He is unable to talk, walk (he uses a wheelchair when out in public), feed himself (he is fed via gastrostomy tube; he cannot chew or swallow; there is always the possibility of him choking), dress himself, or go to the restroom by himself (he isn't toilet-trained). He cannot read, play games, operate a computer, or do any of the normal activities kids his age normally do. He requires much in the way of medical (or personal) care.
Because of Teague's disability, our lives are not like most families'. Everything requires much planning ahead. We have to worry if the places we go to are "handicap-accessable" for Teague's wheelchair, we have to worry about whether we can find a (semi-private) place for us to "feed" our son, we have to worry about what actions to take whenever we have a power failure, we have to find clothes specially made for our son (at six years, Teague , he is the size of a one-year-old baby), or what to do during one of his (frequent) trips to the nearest emergency room whenever he has one of his choking spells (or seizures).
Poor Texas has to endure many hours of being by himself (or at a friend's hous or even at his MeeMaw's and PawPaw's) because our lives are tied up with caring for Teague. I am sure that somewhere down deep inside, he resents having a brother like Teague because he really can't communicate with him or play normal brotherhood-type games. I am sure he wishes that Teague could run, throw a football or baseball, kick a soccer ball, or play computer (or video) games. He doesn't really understand t he implications of his little brother's medical needs, only that it takes precious time away from his parents, and that makes him angry. Very angry.
Texas has a way of acting out a lot of the time. Last year, for example, during fifth grade, Texas nearly got expelled from school after bloodying a fellow classmate's nose and calling his classmate the F-word when the other kid made a nasty comment about his little brother. His grades suffered badly, and we suffered right along with him. We somehow felt guilty for having Texas go through all of this, and we still do. Instead of h aving a brother he could play with or have fun with, his little brother is more like an infant, unable to do anything for himself.
Teague was born healthy, but at the age of six months, he got his vacinnations. Unfortunately, there were complications, serious complications. He had a horrible reaction, and he became extremely sick. The complicatioins left him severely brain damaged and with spastic quadriplegic cerebral palsy. Unfortunately he will never get better: he'll always need 24-hour a day care. He will always have the mind of an infant, even when he becomes an adult.
Of course, we were angry with ourselves--and with the doctor who administered the vaccinations in the first place. We sued; we lost. The doctor won the lawsuit, which doesn't make any sense whatsoever because if it were not for him giving our baby the shots, our son would have turned out okay. We would have had two healthy children instead of just one. Now because of this doctor's negligence, a young life is changed in a cruel manner--and we are left grieving for the little boy that will never again be ours.
The doctor is still in practice today. WHY??
Texas knows his brother is handicapped, but he doesn't know why he is the way he is. He thinks he was born this way; he doesn't really understand the logistics of law or about lawsuits or about cerebral palsy/brain damage, so we have kept the most important information from him. Texas has been hurt too much already; we don't want to add to his ongoing pain.
We are probably wrong in doing this to Texas, but we are afraid if he knew the truth, he would probably intentionally harm his little brother. Texas is bitter about his brother's special needs, and so are we. It's all that damn doctor's fault.
P.S.: We do plan on telling Texas about what really happened to Teague; we are just waiting for the right time. All we can do is hope it comes soon; Texas needs to know.
I can really relate to this sad story. I lived it with Joshua,, only some events were different. Joshua was two when he died. He had so much wrong , its a blessing God called him home. He's been gone seven years now, his spirit remains in my heart...M ( I posted his story on my den as a tribute to him and his fight to survive.)
Hope that the man from Texas will remember his state and the less afortunates there by diverting some of those burning for nothing dollars abroad, to aleviate some people burning here.
Then again, pigs can fly.
All my heart to the family.
Georg
Karen, you've really touched my heart with this one. Not only do I feel sorry for the young child, Teague, but I also feel the near devastation that must be experienced by loving parents who must deal with such gentle circumstances. I can only imagine the extent of pain, worry, concern and constant fear the parents of such a sick child would feel. A descriptive write that touched me deeply.
So sad to read this. My heart goes out you and your whole family. In time Texas will understand what is going on he may understand more then you think. Sending Hugs and Love your way.
Angela
Kids understand far more than what parents think: they may be surprised. I think Texas' parents should tell him the truth.
The key here, Karen, is communication, and a lot of it. Texas may regret not being told later in life: if his parents couldn't tell him the truth about this, what else are they witholding, what else are they lying about? Something to think about...
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