Bill writes about his young daughter, Rhiannon, who lives with a fatal genetic disorder called cystic fibrosis, and her day to day struggle to stay healthy.
Rhiannon is a very sick little girl, and you can see this once you first set eyes upon her. She is tiny for her seven years (she looks more like four), and she is extremely thin. She also has a very bad cough that rattles her entire body, and she is often on supplimental oxygen to help her breathe easier. Her face is often pale, with dark circles encircling her eyes, and her fingers are "clubbed"; it is caused by a lack of oxygen.
She was born with cystic fibrosis.
Rhiannon came to us when she was two, from Texas. She was born with cystic fibrosis, which is a genetic disorder affecting the endocrine glands (the glands that produce mucus and saliva); as a result of her cystic fibrosis, she has trouble expelling mucus from her lungs; and she is prone to respiratory infections that have put her in and out of the hospital; and she is also malnourished. Unfortunately, her disease is fatal; she isn't expected to live beyond the age of sixteen years. But we fear she may go sooner because she has been so sick. As of this writing, she is in the hospital with yet another respiratory infection, and she is receiving extra oxygen and powerful antibiotics to try to curb the infection in her diseased lungs.
Rhiannon has had to learn to live with sickness or going to doctors each and every day, and besides having to take medications (she takes up to 40 pills a day for enzymes or antibiotics), having to have oxygen or breathing treatments, and having to put up with people's stares or comments whenever she has one of her coughing spells, Rhi also has to put up with "thumps" (chest physiotherapy, which is where a therapist or my wife, Louie, pounds on her back, chest, and sides to loosen up any mucus that may be blocking her lungs; she has this up to three times a day, and it has to be done for her to stay alive). She absolutely detests the "thumps" (and who can blame her??), and she is always so happy when the "thumping sessions" are over. (Each session takes up to an hour; that means three hours per day for "thumps"). She also has to live with having to go to the hospital whenever she is having more trouble breathing than what is usual for her, or having yet another infection which causes fever, chest pain, and more trouble for her diseased lungs. She is prone to pneumonia, and several times she has come close to dying; but somehow has managed to survive.
It just goes to show that Rhi is a little fighter, and she is determined not to let her disease affect her; but in her eyes, you can see the hurt and frustration that having a chronic disease like CF can cause, and it hurts both Louie and myself. We know that she is dying, slowly, and it hurts us that she will never grow up to have a husband or children, and she will never know what it will be like to have grandchildren. We try not to focus on her dying, but we still are reminded of it each and every day because of just how sick Rhiannon happens to be. She doesn't look at all healthy, and she is so often subjected to cruel comments or stares from people who don't know any better, and we often worry about how such insensitiveness will affect her personality. Rhiannon is a rather shy and quiet child anyway, and we are afraid that the cruel insensitiveness of people will only destroy her self-worth.
Whenever Rhiannon coughs, she sounds like an old person, and it isn't at all pleasant to hear; but it is necessary for her to try to keep her lungs as clear as she possibly can, and people don't often understand the ramifications of her disease. They either look at her like she has something contagious or something like AIDS, or they move away from her and act frightened of her when all she is doing is trying to survive a deadly disease that is beyond her control.
We try to be there for Rhiannon when she is feeling bad, and we also try to be strong for her; but it is hard when she is suffering so, and it is hard when we are faced with the reality of her dying in less than ten years. It doesn't seem right that such an intelligent, articulate child like Rhiannon has to suffer such a cruel and insidious disease like CF, but we CAN try to help her through her bad days, and we CAN try to support her through her illness and all that it entails.
It is only natural, as we are her parents, and parents SHOULD be there for their children, especially when they are chronically ill. That is when they need them the most, and that is when they need the most support.
Rhiannon is a pretty child, even with all her obvious medical problems. She is thin, small, and delicate, with long, black hair usually worn in two sausage-shaped pigtails that go down her back, big, sparkling black eyes, and a smile that can light up an entire room. When not in the hospital with an infection or pneumonia, she loves to laugh, play on the computer, read, draw, and play with her dolls. She also loves to dance, and she loves to play with her friends or go to the park, where she loves to swing on the swings. She also loves to swim.
Rhiannon has taught us about perseverance in the face of a fatal genetic disorder, patience, courage in even the most trying of circumstances, and life itself, and she has taught us about that even though she may not live much longer, she still can enjoy life, and she still can find time to do things that she loves.
She also teaches us about childlike faith, and the fact that she isn't scared or upset about dying; and so we shouldn't be either. She believes in God and in Jesus, and she has already accepted the Plan of Salvation, so we shouldn't worry about her dying because we know that she is going to go to Heaven when she dies. That alone should be comfort enough to us.
Wow a powerful write, Cystic Fibrosis is such a heartbreaking disease!
God Bless
~Micelle~
Reviewed by Kate Clifford
8/29/2003
Its bad enough that children have to suffer illness's but it really gets me upset that they also have to suffer from the ignorance of people! Great story.
I must admit 95% of the time i am not familiar with all different kind of diseases and genetic disorders...but all i know it must be bad...and thank God I don't know what it's like to be sick!!
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