Tuesday, March 13, 2007
three happy years and counting
This morning marks the third anniversary of the morning I awoke as a father for the first time and The Boy officially arrived in our home. Since that happy beginning it has been a remarkable three years. The Boy continues to grow and blossom and make progress beyond our wildest expectations. He is truly a remarkable creature.
Hydranencephaly is his primary diagnosis. We seen the pictures on an MRI so we know it to be accurate. It is fucking amazing. You can clearly see the thalamus and all those other parts on the inside of your brain. But they two cerebral hemispheres are simply not there. They never formed. Small parts of them are there. There are a few random pieces of brain tissue just kinda floating around up there in the cerebral stew. From the profile images it appears as though there is nothing but fluid in his head above his ears. It is just plain fucking amazing, that is the only way to describe it.
Why exactly that happened will forever remain a mystery of Divine Providence. His biological mother's party lifestyle probably didn't help.
He has a whole host of other secondary ones which follow as a result of the first: seizure disorder, cerebral palsy, visually impaired, profound mental retardation, chronic respiratory issues, I could go on and on.
But there is no need to to do that. My entire philosophy about existence does not allow me to focus on the negative. If you look for problems you will doubtless find them. So just don't look.
As for his prognosis, well fuck what it says on that government site. Those bastards may know a fucking lot but they don't know The Boy. Six years old this June and going strong. So fuck them.
And all the doctors. . . every routine visit to the pediatrician, the dentist, the neurologist, the pulmonologist, the gastroenterologist, brings the same pleasantly surprised looks when they see The Boy and an occasional astonished smile if they see him do the same or laugh.
Somewhat ironically, and also as a testament to just how wrong the doctors can be, he is not currently here with us to mark this anniversary. Like me, he is also on Spring Break this week. He went home this morning with The Nurse, his home healthcare nurse, virtual aunt and therefore a real member of our family. He's spending the next couple of days at her house. Her three boys love him and are wonderful to witness playing with him. The joy in his eyes and his smile when they are near is truly a wonder to behold.
As for the whole big fucking mess and sordid affair that started this story, well. . . let me just say I have some serious unresolved anger issues. Despite my best efforts nothing significant ever happened. Nothing. I could rant endlessly on right now about how the system failed, but I just did that. So fuck off if you are thinking about asking me to do so again.
Still I remain optimistic that someday I will have the opportunity to dance on her grave.
We have tried to totally separate ourselves from the gossip grapevine that sometimes sprouts up with news relating to those days. It took me a year or so, but I finally realized that some events have past through my hands and my realm of influence. To stay sane you have to let things go.
I do my best.
Still, my anger smoulders. And from time to time voices from the past pop up with news that stoke the fire.
For example, last fall we learned that she is still out there, practicing her evil craft, still employed as a nurse who is left alone with innocent and disabled children in the darkness of the night.
I learned over the weekend that at least two of the lives she impacted are still trying to pick up the pieces. You can find them at the online children mall. Or you can if you know who you are looking for. I can not share this information with you, my dear reader, because it violates basic principles of confidentiality. It is enough to say that the evil that men do truly does live on and on.
Ah, I've had my fill of memories dredging up the dark moments of the past. So let's just cut it out, okay?
On this cool and rainy Spring Break spring night I shall raise my glass of cheap-ass blended scotch (still waiting on that tax refund check to come so that I can go back to the single malt) and pause for a brief moment to allow you, my dear reader, to fill your glass so that you can do the same. . .
All for the love of The Boy
|
Hydranencephaly is his primary diagnosis. We seen the pictures on an MRI so we know it to be accurate. It is fucking amazing. You can clearly see the thalamus and all those other parts on the inside of your brain. But they two cerebral hemispheres are simply not there. They never formed. Small parts of them are there. There are a few random pieces of brain tissue just kinda floating around up there in the cerebral stew. From the profile images it appears as though there is nothing but fluid in his head above his ears. It is just plain fucking amazing, that is the only way to describe it.
Why exactly that happened will forever remain a mystery of Divine Providence. His biological mother's party lifestyle probably didn't help.
He has a whole host of other secondary ones which follow as a result of the first: seizure disorder, cerebral palsy, visually impaired, profound mental retardation, chronic respiratory issues, I could go on and on.
But there is no need to to do that. My entire philosophy about existence does not allow me to focus on the negative. If you look for problems you will doubtless find them. So just don't look.
As for his prognosis, well fuck what it says on that government site. Those bastards may know a fucking lot but they don't know The Boy. Six years old this June and going strong. So fuck them.
And all the doctors. . . every routine visit to the pediatrician, the dentist, the neurologist, the pulmonologist, the gastroenterologist, brings the same pleasantly surprised looks when they see The Boy and an occasional astonished smile if they see him do the same or laugh.
Somewhat ironically, and also as a testament to just how wrong the doctors can be, he is not currently here with us to mark this anniversary. Like me, he is also on Spring Break this week. He went home this morning with The Nurse, his home healthcare nurse, virtual aunt and therefore a real member of our family. He's spending the next couple of days at her house. Her three boys love him and are wonderful to witness playing with him. The joy in his eyes and his smile when they are near is truly a wonder to behold.
As for the whole big fucking mess and sordid affair that started this story, well. . . let me just say I have some serious unresolved anger issues. Despite my best efforts nothing significant ever happened. Nothing. I could rant endlessly on right now about how the system failed, but I just did that. So fuck off if you are thinking about asking me to do so again.
Still I remain optimistic that someday I will have the opportunity to dance on her grave.
We have tried to totally separate ourselves from the gossip grapevine that sometimes sprouts up with news relating to those days. It took me a year or so, but I finally realized that some events have past through my hands and my realm of influence. To stay sane you have to let things go.
I do my best.
Still, my anger smoulders. And from time to time voices from the past pop up with news that stoke the fire.
For example, last fall we learned that she is still out there, practicing her evil craft, still employed as a nurse who is left alone with innocent and disabled children in the darkness of the night.
I learned over the weekend that at least two of the lives she impacted are still trying to pick up the pieces. You can find them at the online children mall. Or you can if you know who you are looking for. I can not share this information with you, my dear reader, because it violates basic principles of confidentiality. It is enough to say that the evil that men do truly does live on and on.
Ah, I've had my fill of memories dredging up the dark moments of the past. So let's just cut it out, okay?
On this cool and rainy Spring Break spring night I shall raise my glass of cheap-ass blended scotch (still waiting on that tax refund check to come so that I can go back to the single malt) and pause for a brief moment to allow you, my dear reader, to fill your glass so that you can do the same. . .
All for the love of The Boy
|
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