No Easy Way
Entry posted by Spurius
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A joyous new year to you all.
I am putting this here so that only those who wish to make the effort will be reading.
I am writing this under a strain that I never thought I could bear, but I am. It is about our daughter, Mariann Elizabeth. She is in trouble and we will probably be losing her.
Tests came back last Thursday that she has deletions on one arm of her chromosome make-up, specifically the P4 arm. These deletions lead to a widespread number of problems including major heart, lung and liver problems...seizure disorders, micro-encephaly, severe to profound mental retardation. Between 30-50% of these children die in the first year of life and most are dead by 18 years old. A few learn to walk, none learn to talk.
The only way I can even discuss this right now is to be very clinical, for that I apologize.
We are broken hearted and the world seems kind of gray right now. I will be absent for a bit, or perhaps terse if I leave comments. Again I apologize. I like and respect the lot of you on this site, so I thought I shouldn't leave you hanging.
But really, and I do mean this, have a happy new year. While our pain is very fresh and may go on for a while...it will pass as everyday routines come back. And, despite our dour, outlook the sun will rise. Right now our son Victor lights the way and Mariann will lead us down her path as far as she wishes to take us. You will be reading more about her here if you wish.
Peace to everyone and thank you for the names and congradulations.
As historians we know that history is what we make it to be...take from it what you wish and keep it with you.
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