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I found the blog of a 19 year old girl – Katie Michele who suffers from Marfan Syndrome. Marfan is a connective tissue disorder. This is a very special young lady who deals with Chronic Pain and the fear of aneurysms every day of her life…I have copied part of one of her blogs addressed “Dear Marfan” because I think this is what Vic could have written when she was younger… Please read her letter to Marfan… it will give you some insight into the heart of an ill teenager.
“I wish I didn’t have to wonder if you’d cause any future child of mine suffering, or if I’d lose my own life in the attempt to have one.
”I wish you hadn’t taken my sports and many of my friends, and replaced them with medications and doctor appointments. You’re constantly reminding me that no part of my body is safe from your consequences and that it’s only a matter of time before something else goes wrong. You hurt me, day in and day out, standing or sitting, year after year, from head to toe. Because of you I talk more often to doctors than I do to people my own age.” http://connectivetissuedisorders.wordpress.com/2012/05/02/dear-marfan/
I wish I did not have to wonder what my child’s life would have been like if she had not been born with OI. Dr Frank S, I wish I did not have to wonder what life would have been if you had not chosen to ignore your colleagues warning on how poor Vic’s tissue is. Dr V, I wish I did not have to wonder what my child’s life would have been if you had not perforated her small bowel, not once but twice! And the biggest wonder of all, I wonder what my child’s life would have been like if I had insisted that Dr S spoke to Dr Coleman.
I wish that Vic could have enjoyed her son’s toddler years; that she could have played ball with them, gone on holiday with them. I wish the boys could have known Vic happy and carefree. I wish the boys could remember a day when their Mom was not doubled over in pain, vomiting and sad. I wish they could remember their Mom going to work…looking forward to a normal tomorrow. I wish they could sit and enjoy her playing the piano. I wish that I could wish for Vic to see her son’s finish school, graduate at University, fall in love, get engaged and get married. I cannot. My biggest wish is that my poor child’s suffering will end. That she will truly make peace with giving up… That Vic will stop breathing and that she will float pain free and joyously to join her father and grandparents in Heaven.
Life has many questions. Far more questions than answers. I wonder about the fairness of life. I wonder why Vic has to go through so much pain and agony. I wonder why her boys have to watch her slow decline and painful journey.
I wonder why the bad people, the rapist and murders, thieves and criminals get to live good lives. Why do they have good health?
What has Vic ever done to harm anybody? She was sentenced to a life of pain and misery from conception. PLEASE! I don’t want to hear about the “sins of the fathers” sermon.
A convicted murderer has many appeals before the sentence is executed. A last appeal to the governor or the Supreme Court or who ever for clemency. A terminally ill person does not have that luxury. Their final appeal is to Hospice. Now, what is left for the terminally ill person to do if their last appeal is denied?
They are not kicking and screaming, fighting the sentence anymore. Hospice is their own hope of dying with some dignity and quality of “life” But, like the Supreme Court in the USA and Governor, appeals are rejected quite often. As in Vic’s case.
I will do everything in my power to ensure that Vic is allowed to spend, what is left of her life, as pain free as possible. I will do everything possible to allow her to die with dignity.
I am babbling. And today Vic is having a good day… But tonight lies ahead with it’s pain and terror…