My little 5-year-old sister, Rhiannon, is a special little girl. She is physically disabled, but not in the way to where she can't walk or talk or learn. She is very smart for her age, and she has no trouble with walking, learning, OR talking.
Her problem involves her lungs, and also her digestive system.
She was born in Houston, Texas, supposedly healthy, but then she got a cold a few weeks after her birth, and she couldn't seem to shake it off, no matter how many antibiotic shots she was given, or how many times she had gone to the doctor. She also seemed to be chronically hungry, and she wasn't gaining that much in the way of weight; she still remained quite thin and sickly. She also had a cough that was rather worrisome to her parents.
She had tests done, and it was found out that Rhiannon had cystic fibrosis, which is a endocrine disorder that affects various major organs in the body (lungs, stomach and intestines, sweat and salivary glands). It is often the cause of chronic obstructive lung disease in children, and it is fatal.
We adopted Rhiannon when she was just two, three years ago.
Not many people who have cystic fibrosis live beyond their 20's--and oftentimes, others who have it don't live beyond their childhood or their adolescent years. They remain sick throughout their entire lives.
Rhiannon is no exception. She is often sick. And sometimes she's gotten so sick she's had to go into the hospital because she's gotten pneumonia or some other chronic lung ailment that frequently impedes with her ability to breathe. She has to wear oxygen because she is so often short of breath, and she has to have daily physiotherapy sessions, where a therapist comes over and pounds her on her back, chest, and sides, to help clear her lungs and to encourage coughing, which helps to keep her lungs as clear as possible. But sometimes that doesn't help, and she ends up in the hospital anyway. She also has to have a protein and enzyme suppliment sprinkled on whatever she eats because her body lacks certain enzymes and proteins, and she has to take anywhere from 20 to 40 different pills each and every day to help with her respiratory and digestive tracts.
She also still has a nasty-sounding cough. It scares me whenever she coughs because it sounds like she is hacking up her toenails--or a hairball, perhaps. She coughs a lot, in other words. She is not a very healthy child.
She even LOOKS sick. She is very thin, almost to the point to where she looks emaciated, and her arms and legs look like little sticks. She also has purple shadows encircling her dark eyes, and her thin face is quite pale. But she has a headful of black hair that she wears in two sausage-curl pigtails, and her eyes often sparkle with joy. She is a very happy child, even in light of all of her medical problems.
Rhiannon is a typical little girl, in terms of playing and interests. She likes to watch tv ("Bugs Bunny" and the Looney Tune cartoons are her favorites), play with her ball or her dollies, color or draw with her crayons, read (she's very good at reading), play house and other pretend-type games, and go to church each and every week. She also loves to sing and play her fiddle.
But she is still chronically ill, and it pains me because, like Johnny, she is dying, and not much can be done. Oh, she could have a double-lung transplant, but then that would only be good for a few years because her body would then produce excess mucus, and the new lungs would end up being damaged from the cystic fibrosis. And besides, she's too young to undergo such a risky operation.
Doctors don't think she'll live beyond the age of 10--if she lives THAT long. She has only a few years, at best. So we have to learn to enjoy her while we still can, and we have to learn to love her and enjoy her memories, so when she DOES die, we won't ever forget her or the joy she's brought to our family.
Yeah, Rhiannon IS a special gift. And a gift that WON'T ever be forgotten.
All About how Lila chooses how to handle her "worries" about the first day of school. Another Mom's Choice Award Seal of Excellence recipient in the "Kids with Worries" book series.
