Uncategorized Archive
25 Feb 2009
It’s all about me
Why me? I spent a few years asking, “why me?” Why, God, did you do this to me? Why did you give me two severely disabled children? Some kind of sick joke? Is my middle name Job? Why did you decide my plate could hold all of this? Why me? I’ve stopped asking that question.
25 Feb 2009
What’s that you say?… continued
So we go see the specialist in “augmentative communication.” Fancy words. They try to figure out how to get basic communication going. We first saw them about 6 years ago when she was 10. One of the best hospitals in the country, so they say. They did not help. We went with my daughter, her
20 Feb 2009
Neonatal Intensive Care Unit, Day 6
Back to when she was six days old. It appears the nurse was wrong. We would be bringing her home. They have no idea what is wrong, other than her brain did not fully form properly, there is possibly an issue with her ribs (bogus), had no clue what the future would be like. I
18 Feb 2009
Night terrors
Over the years I have been told often that most often this population dies from aspiration … basically the wrong stuff being sucked into the lungs. Typically, in our case, it means a disabled person refluxing or vomiting while in bed and suffocating on it. Pleasant thought, no? I’ve lived 16 years knowing this. Luckily,
17 Feb 2009
What’s that you say?
My daughter is severely disabled. She is non-verbal, non-mobile and has an incredible personality. She cannot communicate a simple yes or no. She cannot signal where she hurts when in pain. She cannot inform you if she is hungry or tired. She is 16 years old. She has NO communication abilities. She does not come close
16 Feb 2009
“You’re not here”
Of course right after my daugher was born I called and told mom that all was well. I could not tell her her first grandchild was in the NICU. As my wife’s labor was ending, about 500 miles away dad was in emergency surgery. Five cardiac bypasses. Dad and daughter, both in ICUs. I was
13 Feb 2009
Genetics … shmenetics
I am sitting in the NICU holding my daughter, about 5 days into the nightmare. A portly older gentleman walks up to us, introduces himself as the chief of genetics, and sits down. He explains that they have been running many tests and basically as of now have no clue what is wrong with her.
12 Feb 2009
NICU Nurses …
There is a special place in heaven for the nurses that work in the NICU (neonatal intensive care unit). My daughter’s primary nurse, and I wish I could remember her name all these years later, was wonderful. Most of the time whe was walking around the unit holding her! Then, about three days into the