A teenaged girl writes about her younger sister, who has severe cerebral palsy and mental retardation. This is an essay she decided to do before school started for the year.
I have a little sister who is fourteen--but she doesn't look (or act) it, and at times, she is nothing short of a huge embarrassment to me. But like it or not, she is still my younger sister, and I happen to love her with all my heart and soul.
Jodie is in a wheelchair because her legs don't work right and they are too weak to be able to hold up her small body (she was born with severe cerebral palsy that left her brain damaged and unable to do a lot of things for herself), and she is fed by way of a gastrostomy, or stomach, tube that was surgically placed into her abdominal wall because she can't chew or swallow without running the risk of her choking. She is not toilet-trained, and she wears diapers, just like a baby, and at times, she has accidents that sometimes cause her to smell very bad. She is, however, talking a little and is now learning to express herself, which is a huge step in her favor.
Jodie was born in South Korea, and it was apparent from the very beginning that she had serious health problems (but it wasn't until she was a year old when she was first diagnosed with having cerebral palsy and brain damage/mental retardation). She was very difficult to feed (feeding her sometimes took well over an hour), and she wasn't reaching her developmental "milestones" as were most babies her age. At the age of one year, Jodie still couldn't sit up wihtout help, and she seemed weaker than normal (plus she wsn't making any attempts to talk). She was often in and out of the hospital because of ongoing breathing problems, and several times she nearly died because she would choke and/or stop breathing.
After her parents discovered that Jodie had serious physical and mental deficits, they were understandably dismayed, so they ended up giving her up for adoption. They figured that another family would be better suited for their disabled daughter's needs; they were having trouble accepting her disabilities. Of course, being so severely disabled, Jodie had no clue as to what was happening to her--or WHY.
At the age of two years, an adoption agency in Oregon (Holt International) called my parents to tell them about a little two-year-old girl in Korea who had been born with serious physical and mental handicaps, and they said that nobody seemed to be interested in adopting the little girl. Of course, being the compassionate, loving people that they are, mom and dad told the people at Holt that they would be more than happy in taking in the forlorn little Korean orphan.
The fact that she was multiply handicapped did not bother mom and dad in the least. Mom had medical training, and she and her husband had already adopted several children with disabilities, so what was one more?
A year later, after what seemed like a lifetime of waiting, hoping, and praying, little Jodie (then known as Ja Min Soo) came into the Sandusky home, and our lives; we were immediately smitten with this tiny little girl with the large, obsidian, almond-shaped eyes and thatch of silky-straight, soft black hair. We were saddened at the sight of her palsied limbs and the fact that she couldn't walk, talk, sit up, or feed herself; but mom and dad were more than willing to love her as their own child and take care of her. With mom's nursing background and her extensive knowledge of medical issues, Jodie's medical needs were to be no challenge to her, and she was more than happy to help her daughter through any "medical crises" that she faced.
Jodie was a very happy-natured little girl who laughed and smiled often; she was the darling of us, her brothers and sisters. She always seemed to be in a happy mood (she would only cry when hungry or needed a change of diapers or whenever mom or dad left her), and she loved being around us--and other people in general. People fascinated her to no end, and she never tired of watching them; but people felt uncomfortable whenever they first saw Jodie. Jodie made frequent, loud, unintelligible noises whenever she was happy, sad, or excited, and she would wave her thin, sticklike limbs in the air without provocation; or she would unexpectedly go into a seizure that would cause her entire body to shake and for her to start choking. They knew right off that she was severely disabled, and they had no idea as to who she really was or was capable of doing. For all they knew, she was definitely "different", quite unlike them, so in a sense, they acted afraid of her somehow, so they kept their distance or stared at her (or made comments).
Now Jodie is a teenager, but you wouldn't really know that to look at her. She is fourteen (but looks more like six), and she is still quite tiny. Still, she IS cute with her ever-twinkling eyes that crinkle shut whenever she laughs, cries, or smiles, and her long, silken hair is usually done up in two pigtails at the sides of her head (or hanging loosely down her back), adn her big, earsplitting grin brings out the dimples in her cheeks. She is usually dressed in pastel-colored leisure wear (or, when hot, she wears a tee shirt and shorts or lightweight pants) and sturdy, orthopedic shoes, and she sits in a special, custom-made wheelchair that holds her up in a sitting position, since she can't do it by herself. Her chair is made to recline, and she is held in place by belts and buckles that keep her from falling out of her chair. One of us pushes her from behind, and we always enjoy helping to take care of her, whether it be taking her for an evening stroll around the neighborhood (or to the local neighborhood park not far from our place), feeding her by way of her tube feedings, changing her soiled or wet diapers, changing her clothes, pinning tiny earrings to the earlobes of her ears, fixing and rearranging her hair, or helping her through another seizure (or breathing crisis). We enjoy attending to her every whim.
Sure, Jodie does require a lot in the way of care (in a lot of ways, she is more like a big, oversized infant than a teenaged girl of fourteen years), but she has a disability that is beyond her control, and it has affected her body and her mind. She will always have the mind of a very young child (or an older infant), and she will always need somebody to help her with her toilet, her getting dressed or undressed, eating, or taking her in and out of her wheelchair. She will never be able to live independently, and when she becomes an adult, she will probably have to go live at a sheltered residence for severely disabled adults who are both mentally and physically disabled. But Jodie is still happy with her lot in life, and we are indeed happy to have her in ours. She is nothing short of a Miracle, and she has taught us to see through her eyes and just how wonderful the world really is. She has taught us that even the severely disabled have a purpose in life, that they are people too, and if given the chance, they can blossom and grow just like the rest of us. She deserves to have a quality-filled life and a chance to succeed, things that all people dream about at one time or another.
And we are going to ensure that she has that chance.
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Reviewed by Tracey L. O' Very
8/19/2005
a Very heartfelt story thanks for this remider how special life and love truly are.
A truly exceptional write Karen! The positive attitude of the teen-ager is very inspiring and uplifting,should be a great example to
all youth. Kudo's to you!
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
I have a little sister who is fourteen--but she doesn't look (or act) it, and at times, she is nothing short of a huge embarrassment to me. But like it or not, she is still my younger sister, and I happen to love her with all my heart and soul.
