Louisiana writes about Jodie, her severely handicapped 12-year-old daughter, who has severe cerebral palsy coupled with mental retardation.
Jodie is an ever-giggling, ever-smiling presence in our lives; and she makes life fun.
Jodie is now 12 years old, and she has grown into a pretty young lady with long black hair still worn in her pigtails, laughing golden-brown eyes that seem to disappear when she smiles, cries, or laughs (she is Oriental), and a round, olive-yellow face.
Yet she isn't like most girls her age. You see, Jodie is severely physically and mentally handicapped; and she has been so ever since her birth back in Korea, where she was born. She has severe quadriplegic spastic cerebral palsy that affects her entire body, and she is also mentally handicapped, functioning at the level of an older infant or a very young toddler. She has only learned to speak her first words last year, after years of silence, and she is adding to her vocabulary just about every week. Just the other day, she learned "poopy" (for her bathroom; she is not toilet-trained) and "go-bet" (her words for "sleepy", "tired", or "bedtime"). She also learned how to say "meow" (cat) and "goggie" (her word for "dog").
Jodie is in a wheelchair built for her specific needs, and she has always been in a wheelchair, ever since we adopted her when she was three years old, and she is very tiny for her age. At the age of 12, Jodie looks more like five or six. She is pitifully scrawny, and she weighs less than 45 pounds. She is as light as a feather.
Jodie is also tube-fed. She used to eat regular foods, just like anyone else, but because of her cerebral palsy, she was unable to chew or swallow, and she was prone to either frightening respiratory episodes that periodically put her into the hospital, gasping for her every breath and burning with a high fever, or choking episodes where an ambulance would have to be called; but then, at the age of seven, she had a gastro tube surgically implanted into her belly, and now, she gets her nourishment via the tube. She is healthier now than she ever has been before she got the tube, and the last time she ended up in the hospital was when she was eight, when she had a sudden, severe seizure. But she has remained very healthy ever since then and hasn't had a problem (knock on wood!).
To feed her, we either hook her up to her I.V. stand or pour liquid protein or minerals into her tube; and she gets her nourishment this way. It takes at least an hour to feed her, and it takes much patience to do so. She loves to be held anyway, or the attention, and so feeding time is especially pleasant for her.
She also loves to be read to, held, watch the cartoons on the tv (the bright colors flashing on the tv screen can hold her rapt attention for hours), look at (or talk to) her reflection in the mirror on her crib (she sleeps in a crib because she is so little, and this way, we don't have to worry about her falling out and possibly severely injuring herself), go to church (or anywhere, really) with the family, and sing. (She doesn't sing too good, but she still loves to raise her voice in song.)
Because of her obvious physical disabilities, Jodie is often met with stares or looks of revulsion by people. She isn't easy to look at (skinny, tiny for age, is strapped into her wheelchair, and tends to drool uncontrollably), but she still loves people, and she somehow eases their discomfort with her smiles and happy nature.
It isn't long before people are soon interested in her, and they will come to her and talk to her, which is what she wants. Even though she may not express herself that well verbally, she DOES communicate extremely well with her facial expressions and with her eyes, and in her own special way, she can let you know just how she is feeling inside. She can tell you if she is happy, sad, or uncomfortable, and each little noise she may make may clue people in as to what she is trying to tell you, and the level of communication has finally been established.
Jodie has taught us the meaning of patience, perseverance, living with seemingly heartwrenching physical or mental handicaps that affect just about every aspect of her life, and coping skills. She has taught us that even though she may not appear to be much on the surface, on the inside is a little girl just waiting to bubble out, and she is slowly starting to make her voice heard in various ways. She is smarter than most people think, and she is good at letting people know just what is going on inside her mind and body.
Sure, at times, we feel sorry for her because she will probably never be able to live independently, and she will always need someone to care for her and her needs, but Jodie lets us know just how much she loves us, and she is a very sweet and loving little girl. She doesn't get mad often, and she always seems to have a smile on her small face. We then think, "If she can be happy, even with all her physical or mental problems, then we can be happy, too, and all of a sudden, we realize just how lucky we are". She makes us realize just how blessed we are because we could be like her, and this somehow puts things into perspective.
If more people could be as loving and as sweet as Our Jodie is, then maybe the world would be a kinder and gentler place. It certainly is for us, and we owe all our learning experiences from a special little girl named Jodie who is our Daughter.
"...jodie has taught us the meaning of patience, perseverance, living with seemingly heartwrenching physical or mental handicaps that affect just about every aspect of her life, and coping skills. she has taught us that even though she may not appear to much on the surface, on the inside is a little girl just waiting to bubble out, and she is slowly starting to make her voice heard in various ways..." WOW what beauty this is! well done *applause*
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Jodie is an ever-giggling, ever-smiling presence in our lives; and she makes life fun.
