Posts Tagged ‘Faith’

Well it has been several weeks since I have had the opportunity to post anything. Things have been, how shall I say this, hectic sounds appropriate. This week alone the basement in our house has flooded twice, once being at 2 am, the washing machine has become possessed and the dishwasher flooding my kitchen – unrelated to the basement floodings – and of course our day-shift nurse missing 4 of the last 7 scheduled shifts has left little time for blogging or anything else.

I am not certain that I have anything of substance to write about today except to tell you that I am alive. I should update everyone on the 12 year old boy I had written about in my last post passed away two weekends ago. This disease, is horrible. Then news came that a second patient passed away the following day. Too many precious lives taken and sadly it will continue to do so until a cure can be found. As fate would have it, five days later the Fanconi Anemia Scientific Symposium began for researchers from around the world. What a timely, yet tragic reminder for this gathering of scientist and doctors to discuss treatment, research, and the path to a cure. Anyone that is connected to this disease in any way will tell you how precious the angels of FA are towards finding a cure.

Thanks for reading my point of view, http://www.twitter.com/fatherpov


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I have come to realize that as a father to a complex medical needs child that my life is normal. Some that I say this to look at me as if I have three heads, but when you think about it, normal is different for each of us. It is relative to the lifestyle and routines we lead in our daily lives. I remember my son’s physical therapist asking me one time how my wife and I handled everything. My son was the most complex patient she had work with. I laughed as I shook my head in a positive nod and said, ” this is what I do. I have become accustom to this and the things we must do for him medically. When your child has a running nose you help them blow it, I suction my son’s trach tube. You worry about tripping over all the kids toys I am concerned with not tripping on his tubes and wires. You change a dirty diaper, I change a colostomy bag, to me that is all normal now.” I went on to also say, “If you were to ask me to watch a “normal” child my son’s age I bet by the end of the night I’d be screaming for my medically complex child back.” I don’t think I would even begin to know how to care for a child that is not like my son. Funny how that works out isn’t it?


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Being Chosen, My Honor

Having a medical complex child who has a life-threatening illness and struggles daily with pain, issues and challenges has without a doubt turned my life into a completely different direction. I have embraced the opportunity and tried to live up to the task. I have watched my son develop and overcome challenges that many said he would never reach. His spirit and courage, like most children who are chronically ill, is nothing short of inspiring […..]

Read the full article here.

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